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This is to certify that the
dissertation entitled

A CHARACTERIZATION OF FAMILY HEALTH:
IMPLICATIONS FOR BREAST CANCER SCREENING

presented by

SUSAN K. HOPPOUGH

has been accepted towards fulfillment
of the requirements for the

PhD. degree in Family Studies

fluted”, a

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A CHARACTERIZATION OF FAMILY HEALTH:
IMPLICATIONS FOR BREAST CANCER SCREENING

BY

Susan K. Hoppough

A DISSERTATION
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology

2003

ABSTRACT

A CHARACTERIZATION OF FAMILY HEALTH:
IMPLICATIONS FOR BREAST CANCER SCREENING

BY

Susan K. Hoppough

The goal of this qualitative research was to explore
family ecosystem and life course factors associated with
women’s participation in breast cancer screening. This
qualitative research involved 10 women, five self-described
as White, and 5 self-described as African American, aged
40—55 years old. The intent of this research was to delve
into how these women described factors associated with
family ecosystem cultural values and beliefs in the context
of life course influences on their decision to participate
or not participate in breast cancer screening.

Concepts from family ecosystems Bubolz, Sontag, and
the life course perspective by Price, McKenry & Murphy,
provided the context for exploring factors associated with
participation in screening. In this qualitative study,
participants completed semi-structured interviews and
completed ecomap descriptions of social, family, and work

relationships.

Analysis of the data revealed five themes as factors
contributing to the use of health care services and breast
cancer screening. Learned health behaviors, knowledge
dissemination, selective health messaging, access to
services, and personal responsibility were consistently
identified throughout the interview data.

While the theories presented formed the foundation
for this research and helped to understand learned health
behaviors and the use of screening services, the influence
of communication within the family is limited. The use of
a communication theory may have helped to understand the
rationale behind the selective health messaging revealed in
this study. Also, while the family ecosystem stresses the
decision making processes used within the family in
relation to values, needs, goals and standards, it does
nothing to understand the barriers faced by women when they
decide to use the services and the services are simply, not
available. A focus on a communication theory and a social
exchange theory would allow investigation in these

unexamined areas.

Copyright by
SUSAN K. HOPPOUGH
2003

DEDICATION

I dedicate this work to my family
To my husband, John
To my daughters Sarah and Anne
To their significant others, Chris and Mike
To my parents, Thomas and Anna Mae Dunlap
Your dedicated and persistent support
allowed me to accomplish this goal.

ACKNOWLEDGMENTS

This venture began with a dream. Without the support
of family, friends, and mentors, this dream would not have
become a reality. My years at Michigan State University
have been filled with joy and I will leave with memories of
friendships, learning, and a vision for the future.

To my husband John, thank you for your kindness, your
love and your dedication to our family that allowed me to
fulfill this dream. To Sarah, thank you for sharing
latté's and conversation during our days on campus, for
sleepovers, and for your love of music, it fills my heart
with joy. To Anne, thank you for believing in yourself,
for fulfilling your dreams, for cooking and creating and
for your sense of humor, you make me laugh. To my parents,
Tom and Anna Mae Dunlap, thank you for never failing to be
available to help our family. Your never-ending love and
support made this dream become a reality. It truly takes a
village to raise a doctoral student’s family and I can
never thank you enough for the time and energy you devoted
to this accomplishment. And, I thank our pets, Gidget,
Ellie, Grace, Paige, Lucy, Cody, and Snail.

To Deborah Bailey, a fellow doctoral student and

someone who has become a life long friend. Thank you for

vi

your insight, your View of the world, and your gift for
conversation. To the “team” at The Lacks Cancer Center,
thank you for listening and cheering me onward. I give
special thanks to the ten women who agreed to participate
in this study and who willingly shared their life
experiences. I would not have completed this dissertation
without them.

I value my experience in the Department of Family and
Child Ecology in the College of Human Ecology at Michigan
State University. To Stephanie Perentesis, an
extraordinary librarian who always took the time to assist
in my quest for information, but who also took the time to
be my friend and converse about the world. Thank you
Stephanie. To Lisa, Ruth and Mare, thank you for your
technical support and guidance. To my dissertation
committee members Dr. Marsha Carolan, Dr. Doug Campbell,
and Dr. Le Anne Silvey, thank you for your time and
assistance in helping me through the dissertation process.
Finally, to my advisor and dissertation chairperson, Dr.
Barbara Ames, thank you for your wisdom, vision, and
devotion to making this dream become a reality. I could
not have done this without your mentoring, your honesty,
and your advice. My dream has become a reality because of

the support and guidance provided by those mentioned above.

vii

TABLE OF CONTENTS

LIST OF TABLES mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmxi

 

 

 

 

LIST OF FIGURES ........................................................................................................................ xii
CHAPTER 1

INTRODUCTION ......................... n- ................................................................................ 1

Background Information mmmmmmmmmmmmmmmmmm. . ”2

Study Significance ...................................................................................................... 4

Theoretical Framework .......................................................................................... 7

Family Ecosystems .......................................................................................... 7

Life Course Factors mmmmmmmmmmmmmmmmmmmmmmmmmm 10

Purpose .............................................................................................. -m Ammm15

Objectives ........................................................................................................................... 15

Research Questions ................................................................................................... l6

Conceptual Definitions ....................................................................................... 16

Models .................................................................................................................................... l9

Environed Unit and Life Course .mmmmml9

Social/Cultural environment and life course ............ 20

Human Built/Technology and Life Course ........................... 20

Overview of Subsequent Chapters ............................................................ 21
CHAPTER 2

LITERATURE Review ..................................................................................................................... 23

Overview .............................................................................................................................. 23

Family Health ................................................................................................... 23

Family and Health Messages ............................................................ 26

Life Course and Transitions ......................................................... 30

The Intersection of Race, Class and Gender mmmmmmmmm34

Race and Class ................................................................................................ 34

Race and Gender ............................................................................................. 35

Race, Class, Gender, and Health Care Access ......... 37

Breast Cancer Data .................................................................................... 37

Breast Cancer Screening mmmmu _ ............................ 38

 

An Intersection Approach to Breast Cancer Screening 39

Historical Economic Contributions to Access

 

Disparity ...................................................................................... 39
Societal Barriers Contributing to Access
Disparity ............................................................................................................... 40
Institutional Racism Contributing to Access
Disparity ............................................................................................................... 41
Social Origins of Race ........................................................................ 44
“Whiteness” ......................................................................................................... 46
White Women and Family Roles ...................................................... 48
Black Women and Family Roles ...................................................... 48

viii

Culture and Differences ..................................................................... 49
Collectivism versus Individualism ....................................... 50
Summary mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm53

CHAPTER 3
RESEARCH METHODS ........................................................................................................................ 55
Research Design ............................................................................................................ 55
Population and Sample ........................................................................... 56
Site of the Study ....................................................................................... 57
Sampling Procedures ............................ - ..................................................... 58
Data Collection and Procedures ................................................ 59
Instrumentation ............................................................................................. 63
Qualitative data recording, management and
analysis mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm64
Qualitative Research ............................................................................................. 67
‘ Role of the Researcher ........................................................................ 67
Objectivity, Validity and Generalizability ............ 68
Objectivity ......................................................................................................... 69
Researcher Bias and Assumptions ............................................. 7O
Validity and Generalization ......................................................... 74
Summary .................................................................................................................................... 77
CHAPTER 4
RESEARCH FINDINGS ..................................................................................................................... 79
Demographic Descriptors of Participants .................................... 80
Overview of Participants ................................................................................. 80
Health Behavior Overview of Participants mmmmwmmmmmm89
Summary of Results ................................................................................................... 92
Research Question One ............................................................................................. 92
Family of Origin Health Beliefs and Values ............ 93
Family of Origin Health Memory ............................................. 103
Family of Origin Adages and Sayings .............................. 108
Family of Origin and Cancer Meaning .............................. 114
Family of Origin Cancer Sayings and Adages mmm118
Current Family Sayings and Adages .................................... 121
Research Question Two ....................................................................................... 125
Breast Health ................................................................................................ 125
Current Family and Breast Cancer Screening ......... 129
Research Question Three ................................................................................. 133
Life Course ..................................................................................................................... 134
Life Course and Historical Influences ........................ 134
Life Course and Divorce .................................................................. 142
Participation in Breast Cancer Screening and
Life Course ...................................................................................................... 146
Research Question Four .................................................................................... 148
Research Question Five .................................................................................... 155
Current Family Health Values and Beliefs ............... 156

ix

Research Question Six ....................................................................................... 176
Summary of Findings mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm186
CHAPTER 5
DISCUSSION ....................................................................................................................................... 189
Overview .............................................................................................................................. 189
Theoretical Foundations mmmmmmmmmmmmmmmmmmmmmmmmmmm189
Key Findings .................................................................................................................. 199
Theme One: The Influence of Learned Health
Behaviors ............................................................................................................ 200
Theme Two: The Influences of Knowledge
Dissemination ................................................................................................ 203
Theme Three: The Influence of Selective Health
Messaging ............................................................................................................ 205
Theme Four: The Influence of Access to Services
.......................................................................................................................................... 210
Theme Five: The Influence of Personal
Responsibility ............................................................................................. 212
Methodological Issues ....................................................................................... 213
Limitations ..................................................................................................................... 216
Recommendations for Future Research ............................................. 217
Implications mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm22O
Future Researc mmmmmmmmmmmmmmmmmmmmmmmmmmmmmm223
Researcher Reflections .................................................................................... 224
How I Have Changed ................................................................................. 224
Summary mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm226
APPENDICES
APPENDIX A
Informed Consent (Interview) .................................................................. 229
APPENDIX B
Social Ecomap Instructions ........................................................................ 231
APPENDIX C
Interview Guide ......................................................................................................... 234
APPENDIX D
Culturally Specific Attributes ............................................................ 237
APPENDIX E
Ecomap Tables ............................................................................................................... 238
REFERENCES ....................................................................................................................................... 242

LIST OF TABLES

Table 1 Coding Schemes ...................................................................................................... 66

Ix)

Table Descriptors of Participants ............................................................... 81

Table 3 Research Questions Linked with Codes and Key
Findings ..................................................................................................................... 201

Table 4 Difficult Interview Question ......................................................... 215

Table 5 Social Ecomap Legend mmmmmmmmmmmmmmmmmmmmmmmmmmm233

Table 6 Ecomap: Social Relationships ......................................................... 238
Table 7 Ecomap: Family Relationships ......................................................... 239
Table 8 Ecomap: Work Relationships ............................................................... 240
Table 9 Ecomap: Results Legend ........................................................................... 241

xi

Figure

Figure

Figure

Figure

Figure

LIST OF FIGURES

Theoretical Framework Underlying Research mmmmm12

Conceptual Framework: Factors Influencing
Decision Making .............................................................................. 13, 197

Decision Making Process of Breast Cancer
Screening mmmmmmmmmmmmmmmmmmm; .................................................... 14

Revised Conceptual Framework: Factors Influencing
Decision Making .......................................................................................... 198

Social Ecomap ................................................................................................ 232

xii

xiii

Chapter 1

INTRODUCTION

The goal of this qualitative research was to explore
family ecosystem and life course factors associated with
women's participation in breast cancer screening. From an
ecosystem perspective, the research was to also explore if
there were values and beliefs expressed associated with the
decision to participate in screening that may be indicative
of culturally specific attributes of individualism and
collectivism. The life course factors explored included
both normative and non-normative events and transitions
that influenced the decision-making process.

This qualitative research involved 10 women, five
self-described as White, and 5 self—described as African
American, who were aged 40-55. The intent of this research
was to delve into how these women described factors
associated with family ecosystem cultural values and
beliefs in the context of life course influences on their
decision to participate or not participate in breast cancer
screening. The rationale for selecting this age range
included the recommendation for annual mammography
beginning at age 40 (ACS, 2003) and the many life course

transitions and events experienced at this time by women

individually and as family members.

Each woman

participated in one semi—structured interview designed to

explore family ecosystem and life course factors associated

with the decision to participate in
completed an ecomap to describe the
A review of the

their life course.

paucity of qualitative studies that

screening. Women also
relationships within

literature revealed a

have explored these

factors among women who are educated, have higher levels of

income and health insurance.
Background Information

This interest in breast cancer

mother's diagnosis of breast cancer.

mother is someone who,

according to the literature,

screening began with my
In particular, my

would

most likely participate in screening on a regular basis and

if diagnosed with breast cancer,

early stages of the disease.

class, and a high school graduate.

coverage for her medical care,

participated in regular screening.

That is,

had a physician,

the cancer would be in the

she is White, middle

She had insurance

and

In addition, I am a

nurse and could have provided her with additional

information in her decision-making process.

Yet, I was

unaware that she was symptomatic of a breast lump for four

years preceding her diagnosis.

diagnosis,

At the time of her first

the breast cancer had metastasized to her

axillary lymph notes, reducing her chances of long—term
survival. She developed an ipsilateral recurrence of the
breast cancer fiver years after the initial diagnosis.
These led me to wonder what factors contributed to her
decision-making related to screening and to the persons she
included in the decision—making process. In my mothers'
case, participants in the discussion included only her
spouse and her physician.

After that experience, I participated in studies that
focused on the caregiving of patients with cancer and
cancer screening in primary care and Medicaid managed care
organizations. As a doctoral student, I enrolled in
courses that focused on underserved populations, including
the elderly and ethnically diverse groups. There are common
themes both experientially, within the literature and
through anecdotal accounts about those who do not
participate in screening. That is, racial/ethnic group
membership, lack of education and lack of health insurance
increase the likelihood of late stage diagnosis of cancer
(Mikey, Vezina, Worden & Warner, 1997; Ayanian, Kohler, Abe
& Epstein, 1993) as a result of non-participation or late
participation. So, what was different about my mother and
other women like her, and why was her experience more like

that of women in certain racial/ethnic groups, and those

with low income and less education? The ideas for this
study arose from this background knowledge, from continuing
scholarly pursuits in understanding breast cancer
screening, and personal family experience with breast
cancer.

Study significance

In 2003, an estimated 211,300 women with invasive
breast cancer will be diagnosed and an estimated 39,800 are
expected to die from the disease (ACS, 2003). In Michigan,
7,500 women will be diagnosed and an estimated 1,400 will
die from breast cancer in 2003 (ACS, 2003). Also, an
estimated 55,700 new cases of in situ breast cancer will be
diagnosed with 85% specifically ductal carcinoma in situ.
These breast cancers are those that are diagnosed as a
result of screening with mammography (before invasive
breast cancers are felt) (ACS, 2003).

Screening for breast cancer includes diagnostic tests
recommended to all age-eligible women with the purpose of
diagnosing early rather than late stage or invasive cancer.
Between 1991 and 1995 early detection and improved
treatment contributed toward a reduction in the 0.8
mortality rates (1.4%) related to breast cancer among
younger women. The goal of early detection is to reduce

mortality rates by discovering early stage cancer, when

cure is more likely and treatment is less traumatic
(Caplan, 1997; Kerlikowske, Grady, Rubin, Sandrock &
Ernster 1995; Stowe & Schumann, 1999). Breast cancer
continues to rank second in cancer deaths in women. As a
result of both early detection and improved treatments,
mortality rates after 1995 have declined by 3.2% with the
largest decrease in White and African American younger
women (ACS, 2003).

Women face a range of barriers to appropriate
screening that includes lack of insurance, knowledge, and
transportation. Programs such as the Breast Cancer and
Cervical Cancer Program (Anonymous, 1993) have mitigated
some of these access barriers by providing programs that
offer mammography in mobile units to patients at low or no
cost. The Breast and Cervical Cancer Mortality Act of 1990
focused on increasing screening for women with low income,
limited access to insurance coverage, and minority group
membership (Anonymous, 1993). In Michigan, in the second
year of the program, locations for women to receive breast
and cervical cancer screening increased by 260%, from 24 to
62 locations (Anonymous, 1993). Targeted programs and
efforts to increase breast and cervical cancer screening
among American Indian women include the training of nurses

to deliver services though outreach programs (Petersen,

Trapp, Vierkant, & Sellers, 2002). The American Cancer
Society and other organizations offer educational seminars,
workshops, and print media to increase knowledge related to
cancer screening with the purpose of increasing the use of
breast cancer screening services.

As stated by the 2000 Behavioral Risk Factor
Surveillance System (BRFSS) in the Breast Cancer Facts &
Figures (ACS, 2001a), the percentage of women in the United
States over the age of 40 who had a recent mammogram was
62.6%. Even with efforts to increase access, those least
likely to report having a recent mammogram were women with
low income or less than a high school education and women
from certain ethnic/racial groups (ACS, 2001a). We know
little about the influence of life course events and family
ecosystem factors associated with the use or non-use of
breast cancer screening. In addition, we know little about
how efforts to address these factors may increase
screening.

To gain a better understanding of life course and
family ecosystem influences, this study explored factors
related to breast cancer screening and health among those
women most likely to participate in screening—White women
and African American women with higher levels of education

and health insurance. It is known that low income and less

education are descriptors of women who are less likely to
participate in screening (ACS, 2001a). By selecting women
who have higher levels of income and education it was felt
that family ecosystem and life course factors associated
with the decision to participate in screening services
would be more evident in the targeted sample of White and
African American women. Little is known about the factors
that women consider when making the decision to participate
in screening. This study explored the influence of health
values and beliefs within a life course and a family
ecosystem perspective on this decision-making process.
Theoretical Framework

Concepts from family ecosystems (Bubolz & Sontag,
1993) and the life course perspective (Price, McKenry &
Murphy, 2000) provided the context for exploring factors
associated with participation in screening.
Family ecosystems

The family ecosystem model involves three separate
environments in which the environed unit (family) interacts
with the human built/technological, social/cultural, and
natural/physical environments. The social/cultural
environment proposed by Bubolz and Sontag (1993) includes
the relationship of other people to families (neighbors

within communities), cultural constructions in the form of

norms, cultural values and patterns of behavior, and
social/economic institutions that influence behavior.
Families interact and are interdependent with these
influences. Social/cultural environmental factors of
interest for this study include knowledge and beliefs about
health that form the norms and patterns of behavior and how
individuals View responsibility toward the health of those
with less access to health care. Exploring these factors
and whether they can be identified as culturally specific
attributes of individualism versus collectivism are of
interest in this study.

The social/cultural ecosystem considers family
values, needs, the use of resources, and decision-making
related to problem solving and achieving family goals
(Bubolz & Sontag, 1993). Decision-making within the
ecosystem model is an important consideration in whether or
not women participate in screening. Decision-making
functions to maintain the family’s most important values
and brings about non-disruptive change (Bristor, 1990).

Within a family, decision-making is based on an ideal
state, and motivation is required in order to make a
decision (Bristor, 1990). Problems arising within a family
during decision—making occur when conflict exists between

the self-interest of an individual and family well-being.

At other times, problems arise when a decision is based on
conflicting values within the family system (Bristor,
1990). Components of a decision include values, goals,
standards, and needs. Decision-making is a process
requiring recognition of the need for a decision, weighing
acceptable alternatives and facilitation of action toward
the alternative. While people have different decision-
making styles, all decisions reflect a process of ordering
information for reflection and choice (Bristor, 1990).

Decision—making includes both rational and irrational
components based on values, historical events influencing
the decision, feelings, facts and observations of past
decisions. Consequently, decision—making discriminates
between useful and unimportant information and ends in an
action that will achieve the objective. At times,
individuals and families choose a course of action that is
the least challenging and may not always be the best choice
(Bristor, 1990). This model of decision-making may explain
why uninsured or underinsured women chose to not
participate in screening. The decision may be the result
of weighing alternatives (paying out of pocket expenses for
the test versus using resources to meet other family needs)
and the conflict between self—interest and family well—

being.

The family ecosystem model lends itself to exploring
the decision—making process and social/cultural influences
women experience through interactions with health care
organizations that provide cancer-screening services.
Despite efforts and supports for breast cancer screening,
20% of all age eligible women continue not to participate,
and even fewer participate on a regular basis (ACS, 2001A).
Life course factors

A life course perspective provides the opportunity to
View the individual within a family over the course of time
with both a micro and macro system approach. The life
course incorporates the effects of historical,
generational, and individual time as influences on the way
that individuals and families experience tasks and
transitions (Bengston & Allen, 1993; Price et al., 2000).
A life course view also allows for exploring the way that
individuals interact with ecosystems in terms of their
historical, generational, and individual times and how
these perspectives affect transitions and events
individuals may experience. Figure 1 schematically
represents the ecosystem and life course frameworks related
to participation in breast cancer screening. This figure
represents the interrelationships between and among the

family ecosystem environments superimposed along the life

10

course perspective to demonstrate the varied factors
influential in the decision to participate or not, in
breast cancer screening (Figure 1).

Figure 2 represents conceptually, the factors
influencing the decision to participate in breast cancer
screening. The shaded area surrounds factors associated
with the cultural context in which decision-making occurs.
The cultural context includes knowledge, beliefs, and
values related to breast health that influences the
decision to participate in breast screening. The broken
lines connected to income, education, and insurance
represent those confounding factors eliminated in the
sample selection process. Race is highlighted because only
White and African American women will participate in the
study, and the literature demonstrates there is a racial
difference in screening for breast cancer (Wesley, Trapp,
Vierkant & Sellers, 2002).

Figure 3 represents the decision-making process that
includes recognition of the need, the value of health, the
goal of participating in cancer screening and the standard
used to measure the goal. This decision-making is an
individual decision that occurs within the context of the

family and may compete with the needs of the family.

11

Figure 1. Theoretical Framework Underlying Research

Natural/Physical Environment

Human Constructed Environment

 

Social/Cultural Environment

 

 

 

Present Future
Transitions/Events Developmental Stage

Environed Unit m , I 7

W' ‘ Breast

Past
Life Course

 

 

 

 

Norms
Values
Behaviors

004-} 00

 

TE _ _ '% ‘ Cancer '
.ne lnd1v1dua1 ‘ Screening}

l2

Figure 2. Conceptual Framework: Factors Influencing

Decision Making.

.........................
..............
.. ‘0
n 0.
.v -.
.....

Insurance
‘ o
/ \ I ............................
Race
0 n
o 0
V
The decision to
Knowledge . participate in
breast cancer
screening
Beliefs

 

 

.................
......
.' '

Life Course
Transition

l3

Figure 3. The Decision Making Process of Breast Cancer
Screening

 

,a- ......................... “‘m, GO a l
_, ., , . ?-. " —
3x . , "a ”y;_ ' gm, related
f Recognition .E N» Family versus . to cancer
i Of Need ii Individual Need -
é §“a_, ............. ‘ screening

‘ u
. .
.

-n............ ........ ‘ ,.......................2

o
......
o. o
.....
"""""""
h. .I'
"'Ooo-unuont'”

'.
._ .
.....
-----
.....
.....
''''''''''

Use of breast

\
. cancer
of annual a

-. s creening sscerreveinclensg

Standard

.
o
.I.
o, .'
.. .-
.....
......
.........
............

l4

The individual emotional component and the recognition of
need for mammogram also may be influenced by fear related
to breast cancer (Bryant & Mah, 1992; Savage & Clarke,
2001). This model (Figure 3) also represents how family
relationships may mitigate this fear and influence the
decision-making process in a positive way.

To date, very little research has focused on the
factors that facilitate participation in breast cancer
screening. Using a family ecosystem and life course
perspective to explore the decision-making surrounding
screening may help to understand the process.

Purpose
The primary focus of this qualitative research is to
explore family ecosystem and life course factors associated
with health beliefs and the decision-making process related
to the use of breast cancer screening services.
Objectives
The short-term objectives of this research are:
1.To explore the influence of beliefs and values about
health on the decision to participate in breast cancer
screening.
2.'To explore the influence of life course transitions and

events on participation in breast cancer screening.

15

3.To explore characteristics of women aged 40-55, that
reflects culturally specific attributes.
Research Questions
The general research questions that guide the design
of this qualitative study are:

1.How do women describe their health needs in
relationship to their family?

it Where do women learn about their breast health needs?

3. What family related factors do women consider when
making the decision to participate (or not) in breast
cancer screening?

‘4.What are the effects of life course transitions and
events experienced by women on their participation in
breast cancer screening?

5.How do women perceive their family relationships, life
course transitions and events as influential in their
decisions to participate in breast cancer screening?

6.What factors described by women in their decision to
participate (or not) in breast cancer screening can be
described as culturally specific attributes?

Conceptual Definitions
The following conceptual definitions relate to the
research objectives, the research questions, the developing

model, and the review of the literature.

16

Breast cancer screening: refers to a clinical breast

 

examination (CBE) performed by a health care provider
during a physical examination, and mammography.
Mammography is a form of breast x-ray. The ACS (2003)
recommends women forty years and older have both annually.

Decision—making: refers to a deliberate and conscious act

 

of selecting from two or more choices into a course of
action (Bristor, 1990).

Age eligible: refers to the age boundary set by breast

 

cancer screening guidelines. For this study age
eligibility refers to women who are age forty years or
older because the ACS (2003) recommends annual examinations
for clinical breast examinations and mammography at this
age.

Culture: refers to a complex ethnographic collection that
includes learned group behavior (Clifford, 1988).

Culturally specific attributes: refers to those attributes

 

of a culture identified as individual or collective in
nature (Triandis, 1995).

White: another term used to describe individuals of
European descent (Smedley, 2001), at one time referred to
as Caucasians.

Rage; refers to a controversial and ideological term

socially created to represent and structure the world, and

17

to categorize individuals and explain differences based on
racial differences and used to describe groups who share
the same origin (Miles, 1993).

Individual time: refers to chronological time and focus on

 

periods of one’s life. Individual time also includes
cohort time or age categories based on the time of birth
(Price, et al., 2000).

Historical time: refers to societal (macrolevel) changes

 

over time and how these changes affect the individual and
family (Price, et al., 2000).

Generational time: refers to the rank order of individuals

 

within a family and the roles/expectations associated with
those positions (Price, et al., 2000).

gglue: refers to something held in high esteem or deemed
important (Bristor, 1990).

§g§lgz refers to elements of a decision that have a
foundation in a value (Bristor, 1990).

Standards: refers to a measure or model for comparison.

 

Standards indicate a degree or measure of strength in a
value and sets limits of what is acceptable in working
toward a goal (Bristor, 1990).

Collectivism: refers to a social pattern of linked

 

individuals who view themselves as parts of a collective

(family), are motivated by the norms and duties of the

18

collective, give priority to the collective over their own
personal goals, and emphasize their connections to the
members of the collective (Triandis, 1995).

Individualism: refers to a social pattern of loosely linked

 

individuals who View themselves independent from collective
groups, are motivated by their own preferences or needs,
prioritize their own goals over the goals of the
collective, and emphasize the advantages or disadvantages
to associating with others (Triandis, 1995).
Models

The model in Figure 1 represents a theoretical
framework of the relationships between life course and
ecosystem factors influencing breast cancer screening.
Fluid boundaries, shown as broken lines, exist within and
between each environment and the life course experiences of
the individual living within a family unit.
Environed unit and life course

Individuals in this study, from an ecosystem
perspective, are members of families. From a life course
perspective, the participants in this study also are from
the same generational time. Consequently, they may be
experiencing similar life course transitions and events
characteristic of mid—life. Examples of these events may

include, but are not limited to, experiences such as

19

children leaving home (normative event), divorce and other
changes in the marital dyad (non—normative events), or
caring for aging parents (normative event).
Social/cultural environment and life course

Within this study, the social/cultural environment
includes cultural norms (beliefs and values about breast
health) related to participation in cancer screening that
is influenced by membership within a social group. As
members of the same cohort, each of the participants has
experienced a similar historical context that may influence
the decision to participate in breast cancer screening.
However, because of differences in race, the historical
events influencing the decisions may have been experienced
differently by the White and African American women.
Human built/technology and life course

The human built /technological environment in this
model includes the health care system and the health care
provider. While not a focus of the research questions, the
human built/technology environment is an important part of
the ecosystem model and may influence access to screening
via health insurance, transportation, screening equipment,
and facility use.

In Figure 1, a time line drawn over the ecosystem

environments represents the ongoing and ever—changing

2O

influences of life course transitions/events experienced by
women as they move through developmental stages. The
double-headed perpendicular arrow represents the
interactive effect of the family ecosystem and life course
transitions on the decision to participate in breast cancer
screening. Ultimately, the patient, who is a member of a
family and possesses a set of beliefs that interact within
a social/cultural environment, transforms knowledge that
may or may not result in participation in breast cancer
screening.

The conceptual framework (Figure 2) and the decision-
making framework (Figure 3) represent what may be factors
associated with breast cancer screening for most women. It
is within the context of these models that this research
will be developed. In summary, this research focuses on
family ecosystem and life course transitions/events that
influence women’s perceptions of health and participation
in breast cancer screening. This focus will lead toward a
fuller understanding of the influence of family
relationships versus race/ethnicity in the decision to
participate in appropriate screening services.

Overview of subsequent chapters
This chapter outlined the importance of this research

and introduced the research questions. Chapter 2 presents

21

a review of the literature that examines the foundation for
this research within the context of the family, cultural
attributes (of individualism versus collectivism), the
intersection of race, class and gender. Chapter 3 links
the supporting theory and research questions with the
methods used to conduct this qualitative research,
including rationale for the processes employed. Chapter 4
displays and discusses the research findings. Chapter 5
summarizes the findings and provides recommendations for
further research as well as limitations of this study in

answering the research questions.

22

Chapter 2

LITERATURE REVIEW

This literature review begins with an exploration of
family health, family systems and the concepts of
individualism versus collectivism as cultural attributes.
In addition, the concepts of race, class, and gender are
reviewed to add a contextual frame of reference for
examining participation in breast cancer screening
experienced by women. This context is important in
understanding the environments in which women interacts
that influence breast cancer screening participation.

Overview

Overall, screening methods for detection of breast
cancer have led to the diagnosis of early stage disease.
However, barriers to screening remain for women,
particularly for women with low income, low education and
those from minority populations. That is, barriers to
cancer screening may in part, be the result of
social/cultural beliefs within the family and disparities
related to the intersection of race, class, and gender.
Family health

Family health is an ambiguous concept (Denham, 1999a).

While the focus of this research is not family health, it

23

 

 

is important to understand that family members are
interdependent, and the health of one individual affects
the health of the family. Key findings in one study of the
definition of family health and practice in a sample of
Appalachian families concluded that mothers were
responsible for family health, members of families
participated in health routines, family health was affected
by social/cultural practices and beliefs, the incorporation
of health knowledge in daily routines within the family was
inconsistent, and community and culture affect family
health (Denham, 1999a). Within this study, families of
origin played important roles in shaping health beliefs and
practices. However, these beliefs and practices among
children were influenced by social contexts including peer
relationships, media, and teachers. Spiritual values and
family traditions also affected parental health beliefs and
values (Denham, 1999a).

In the same study (Denham, 1999a), families used
health routines to translate individual beliefs into family
behaviors. Examples of these routines included dietary
practices, sleep, activity, avoidance behaviors, and
medical consultation. Family members then used the health
routines to “a) support developmental processes, b) avoid

illness, disease, and injuries; c) attain, sustain, and

24

regain member health; d) obtain and distribute health
resources, and e) construct unique family health
paradigms”, (Denham, 1999a, p. 140). Family health is an
important consideration in linking individual health
variables with family structure, function and the context
in which individuals live (Denham, 1999a).

In another study of family health among economically
disadvantaged families (Denham, 1999b), households were
identified as the location where family members integrated
knowledge about health and health beliefs (Denham, 1999b).
Within this group of disadvantaged families, members were
more concerned about learning to live with medical
problems, changing behaviors, accessing enabling resources,
and other issues rather than increasing services related to
pregnancy, having more providers in the community and
getting more health knowledge (Denham, 1999b).

Family legacy is another concept to consider in
understanding family health. Family legacy is a “living
tradition, an aspect of the family’s life world reshaped
over time” that connects the family’s past with its present
and future (Plager, 1999). Family legacy, and the stories
families tell, demonstrate how families develop meanings
about family health concerns and how the family then puts

those meanings into practices, habits, and activities

25

(Plager, 1999). These practices then act to promote or
detract from family and individual health (Plager, 1999).
Understanding family legacy and the contribution
family legacy makes to health choices in terms of health

promotion and disease prevention may provide some
understanding of participation in cancer screening.
Family and health messages

As an outcome of the autobiographical nature of this
study, a review of the literature related to health
communication within the family was added. Understanding
health within the context of the family requires
consideration of family communication. A brief review of
the literature offers some insight into current views of
family communication and health related factors.
Fitzpatrick and Badzinski (as cited in Fitzpatrick &
Ritchie, 1993) determined that the “nurturance of family
members takes place primarily through the exchange of
verbal and nonverbal messages” (p. 565). Both the style of
communication and the content of messages vary within
families and cultures. For example, variation in the style
of communication occurs within individualistic versus
collectivistic cultures. Individualistic cultures
encourage self-expression while collectivistic cultures

encourage self-censoring (Ng, Loong, He, Liu & Weatherall,

26

2000). Within the family ecosystem model, communication is
viewed as one of the most important interactive processes
within the family. As a result, information and meaning
within the family and between systems occurs (Bubolz &
Sontag, 1993).

Family communication patterns have been examined to
determine the development of reticence among children
(Kelly, Keaten, Finch, Duarte, Hoffman, & Michels, 2002).
The author’s studied 155 students involved in a university
based reticence program to determine the influence of
family communication as contributing to the development of
reticence. Kelly, et a1. (2002), determined that reticent
individuals have families with inhibited or absent
communication patterns. The author’s suggest that the
development of coping skills for dealing with negative
emotions is prevented from developing as a result of this
inhibited communication style.

Lytle, Birnbaum, Boutelle & Murray (1999) explored the
context of health messages within the family and issues
faced by teenage children. In a study of 309 parent and
teen pairs, participants were asked to rank order various
topics included in family discussions. The author’s
suggest that parents prioritize health topics within family

communication and that those messages viewed, as low risk

27

may not be communicated within the family or topics such as
sex, may be avoided. Within this study, low socioeconomic
groups of African American parents significantly discussed
eating habits more frequently than White adults. The
author's also noted that avoiding the discussion of health
promotive behaviors during adolescents may lead to adult
behavior patterns that are difficult to change.

Recent research related to health communication
provides some suggestions for the development of effective
health messages for women. Health communication strategies
for addressing barriers to breast cancer screening among
African American women were identified by Frisby (2002).
The ninety—two women in this study were asked to identify
risks associated with breast cancer and to determine the
use of advertisements within African American publications
to increase knowledge about breast cancer prevention.
Results of the study revealed negative thoughts and
feelings about breast cancer and little knowledge or
understanding about risk factors. Frisby suggests that to
persuade African American women participate in screening,
advertisements of African American women role models and
survivors must be used. Women in this study also suggested
the use of rational advertising appeals that included

causal and risk related information.

28

 

Childhood is the time when health behaviors and
lifestyle patterns are established and persist throughout
adulthood (Misra & Aguillon, 2001). Parents represent one
of the most influential groups in the acquisition of health
promotion behaviors such as eating behaviors and smoking.
Misra & Aguillon (2001) studied the predictors of health
behaviors in rural adolescents and concluded that nutrition
and physical activity levels are under the influence of
parents. The level of education of the parents predicted
the dietary habits of the adolescents. The authors also
stressed the influence of peer groups on health behaviors
especially among females. As a result of the increase in
dual career and single parent families, the author’s
suggest the need for enhanced health education programs in
rural areas to improve levels of good health behaviors.

In summary, communication within the family is an
important interactive process. Family health communication
occurs differently between families. Both the style of
communication and the perception of priority topics may
contribute to the development of behavior patterns in
adulthood. Behaviors are learned in the family and in
response to peer influence. These behavior patterns may be

difficult to change and may require specific strategies to

29

promote the use of preventive methods related to breast
cancer screening.
Life course and transitions

The concept of health related to life course
transitions is receiving increased attention among health
researchers. A life—course View recognizes the cumulative
effects of factors learned in early childhood upon the
production of disease in later life (Smith & Hart, 2002).

Halfon and Hochstein (2002) offer a framework for
measuring health, health system design and long-term care
investment in health development entitled the Life Course
Health Development (LCHD). According to the authors, "the
most important implication of the LCHD framework is the
need to treat health development as a long-term
investment". That is, focused attention on the health of
children will result in improved health experiences in mid-
life and old age (Halfon & Hochstein, 2002). Within the
LCHD model, environments are dynamic and provide varied
influences on the lives of individuals that are stage
dependent. While peer influences shape the health
development of adolescents, social networks and systems
influence the lives of older adults (Halfon & Hochstein,

2002).

30

A life course perspective has been used to understand
childhood gender inequality across the life course
(Baunach, 2001). Using bivariate, multivariate, and
cluster analysis, the author examined childhood gender
inequality in preindustrial societies where childhood often
does not exist or exists in a rudimentary form. The
simplicity of preindustrial societies was an important
consideration in examining childhood gender inequality.
Using data from the Standard Cross-Cultural Sample, 186
societies were included in the study. Within this study,
economic and familial factors consistently were associated
with childhood inequality. While family and economics have
a greater effect on childhood gender inequality, politics
contributed more to adult gender inequality (Baunach,
2001).

A life course perspective lends itself to
understanding the lives of older adults in retirement,
grandparenting, and their economic well—being (Kim & Moen,
2002; Crosnoe & Elder, 2002; Vartanian & McNamara, 2002).
Men and women undergo complex adaptation processes during
the transition to retirement. Factors viewed as important
in the late midlife transition, aside from financial
adequacy, include personal (health) and social-relational

resources (marital quality) (Kim & Moen, 2002).

31

Grandparent-grandchild relationships and the
intergenerational dynamics of those relationships from a
life-course perspective call attention to the linked lives
of family members (Crosnoe & Elder, 2002). Using data
collected in the Iowa Youth and Families Project, the
authors wanted to know if the grandparent-grandchild
relationship changed when children enrolled in higher
education. The results of the study indicate that the
relationships do change in a positive way. The authors
also highlighted how demographic changes have increased the
importance of grandparents within the family structure and
on society. These demographic changes include decreasing
mortality rates resulting in lengthened relationships,
decreasing fertility rates limiting the numbers of
grandchildren in a family, and increasing divorce rates
that involves more active grandparenting (Crosnoe & Elder,
2002).

Economic well-being is a concern in later life with
older women more likely to live in poverty than older men
are (Vartanian & McNamara, 2002). The authors used data
from the Panel Study of Income Dynamics (PSID) to examine
economic outcomes across a 30-year span for a sample of
women representative of the nonimmigrant US population.

Midlife characteristics (workforce participation, income,

32

and rural residence) strongly influence economic outcomes
in later life. Coupled with midlife characteristics, late—
life events contribute to the persistence of poverty in old
age. The authors suggest that the solution of poverty
among older women must include efforts to address midlife
events that effect later life poverty. The heaviest
concentrations of poverty in old age are those vulnerable
groups of women who were previously poor, non-White, and
unmarried. This suggests that older women living in
poverty may also experience problems related to racism, a
lifetime of poverty and the long-term effects of divorce
(Vartanian & McNamara, 2002).

These studies underscore the need to consider life
course transitions and events as important factors
influencing the lives of individuals and families.
Understanding life course transitions and events and the
influence on decision making related to health in terms of
prevention may provide some understanding of participation
in cancer screening.

Along with family health and a life course
perspective, race, class and gender provide a contextual
View of factors affecting women in our culture and their
ability to obtain needed health care such as breast cancer

screening.

33

The Intersection of Race, Class, and Gender

Some authors have offered explanations for the
differences in access to health care experienced by low-
income women as a product of individual characteristics
(Ulcickas, Yood, Johnson, Blount, & Abramset, 1999;
Broyles, McAuley & Baird—Holmes, 1999; Nerenz, 1998; &
Meischke, Andersen, Bowen, Kuniyuki, & Urban, 1998).
Traditionally, the uses of race, class, and gender were
descriptive and categorical, resulting in a labeling of
individuals within family models (Collins, 1998a; &
Guralnik, & Leveille, 1997) to explain differences. An
intersection approach examines race, class, and gender as
constructs of one another rather than as distinct social
hierarchies (Collins, 1998b).
Race and Class

A history of racism and viewing racial differences as
a result of biological rather than political or economic
phenomena has resulted in the belief that African American
family organization is a product of cultural and
psychological values (Collins, 1998a). However, attributing
the change in African American family structure in the past
30 years (from two parent structures to single female-
headed households) global capitalist development highlights

the political and economic challenges African Americans

34

face (Collins, 1998a). Changes in industrial development
patterns effect jobs that are available on American soil.
Emerging evidence suggests the need to focus on gendered
divisions of labor, mechanization, and global political
economy as factors associated with African American and
minority family organization (Collins, 1998a). These
global developments influence the type of jobs minority
women have that result in poor health care access
frequently due to lack of health insurance.
Race and gender

Race evolved as a belief that there were biologic
characteristic differences among groups of people expressed
in terms of distinct, self-reproducing groups (Miles,
1993). The idea of race and the existence of these
biologic differences among individuals became a common
assumption in science. Consequently, the categorizing of
individuals within racial groups was a common practice
beginning in the 1920’s (Miles, 1993). Race associated
with minorities, in particular African Americans, became
fashionable in the 1980’s as a means of mobilizing
political factions against “racial struggles” (Miles,
1993). While the biologic difference attributed to race is
no longer accepted, racism in society serves as a mechanism

to allocate scarce resources (jobs, welfare, health care,

35

etc.) among individuals deemed deserving and “others”
judged less worthy (Miles, 1993).

Thinking of gender in terms of patterns of differences
and domination between men and women helps to understand
the social construction of the concept of gender (Baca Zinn
& Eitzen, 2002). Women are disadvantaged when compared to
men in terms of income and education (Baca Zinn & Dill,
1994) because of traditional roles assumed by White women
(caregivers of the family) that lead to an unequal power
structure within families (Baca Zinn & Eitzen, 2002).
Historically, White women who worked outside the home fell
victim to “capital logic” geared to increase profit
margins. Specifically, White women took low-paying jobs
because of the perception that they were unqualified for
other jobs or because women were viewed as “satisfied” with
the low-level jobs. Consequently, these practices resulted
in class stratification that persists today (Baca Zinn &
Dill, 1994). Historically, African American women have
always worked outside the home in jobs that limited access
to benefits (custodians, cooks, domestic workers) (Weddle-
West, 2000). Only recent changes in access to higher
education have made the experience of employment for middle
class African American women similar to the experience of

White women. However, older African American women are less

36

likely to be married than White women and have the economic
benefits as a result of marriage (Cochran, Brown, &
McGregor, 1999).
Race, class, gender and health care access

A discussion of the intersection of race, class and
gender provides the background to examine barriers to
health care. The discussion of race, class and gender
related to breast cancer screening among underserved women
includes three perspectives contributing to the disparity
in access. These are historical economic contributions,
societal barriers (contributing to disparity) and
institutional racism. However, before discussing the
intersection of race, class, and gender, it is essential to
understand the current View of breast cancer screening
among underserved populations and recommendations for
breast cancer screening.
Breast cancer data

Socioeconomically disadvantaged populations bear the
excess burden of cancer mortality and increased morbidity
because poverty is associated with less access to health
care and an increased incidence of cancer resulting in a
lower, survival rate. Populations most vulnerable to late
stage diagnosis and death because of breast cancer include

African American women (31.4 per 100,000) compared with

37

White women (25.3 per 100,000) (ACS, 2001b). While the
incidence rate for newly diagnosed cases of breast cancer
is 13% lower in African—American women than White women,
breast cancer remains the second leading cause of cancer
death for African—American women. In addition, breast
cancer death rates among African American women are 28%
higher than among White women. Whether this difference is
attributable to late stage diagnosis or tumors that are
more aggressive is unclear (ACS, 2001b).
Breast cancer screening

The goal of breast cancer screening (clinical breast
exam and mammography) is to discover cancers early when
cure is more likely and treatment is less traumatic
(Caplan, 1997; Kerlikowske, et al., 1995; Stowe & Schumann,
1999). Women from lower socioeconomic groups or those
without private insurance are less likely to receive
comprehensive breast cancer screening (Mikey, et al., 1997;
Ayanian, et al., 1993).

Because of increased use of mammography, breast
cancer incidence rates steadily increased from 1982 to
1987, with a stabilization of rates in recent years (ACS,
2001c). Mammogram usage increased from 27.4% in 1987 to
68.9% in 1998 among women reporting a mammogram within the

previous two years. Within Michigan, the percentage of

38

women reporting having had a mammogram within the past year
(recent mammogram) included 65.8 % of women aged 40+, 66.9%
(aged 40-64), 70.2% (aged 50+), and 63.7% (aged 65+ years).
The percentage of women reporting having had a recent
mammogram and a clinical breast exam aged 40+ was 60.4%,
62.3% (aged 40-64), 63.6% (aged 50+ years), and 56.6% (aged
65+)(ACS, 2001c). Variability in mammography use
(mammogram within the past two years) occurs among women
over the age of 40 by race (Whites, 68%; and African
Americans, 66%)(ACS, 2001c). The data indicate a need to
maintain or improve breast cancer screening, especially
among African American women.

An Intersection Approach to Breast Cancer Screening

An explanation for the disparity in breast cancer
screening experienced by African American women when
compared with White women may be evident through an
examination of the economic status of women. An
intersection approach lends itself to viewing the disparity
as a result of the economic status of women rather than
characteristics of the women who are eligible for the
service.
Historical economic contributions to access disparity

Women of color traditionally receive the lowest wages,

perform the worst jobs, or are unemployed (Baca Zinn &

39

Dill, 1994). Historical factors associated with the

 

economic strains experienced by white women include low
work force participation, less work experience, and less
education (White and African American women). These issues
contribute to fewer resources for women in terms of social
security, pension accounts and personal savings and less
access to the best health insurance.

The economic disadvantages experienced by African
American elderly women relate directly to their working
lives because they were more likely to be poorly educated
and hold low paying jobs. Also, job discrimination may be
a factor determining the types of jobs African American
women were able to obtain (Ozawa, 1995). As a result,
women of color are less likely to have access to the best
health insurance and more likely to have no health
insurance or insurance through the Medicaid/Medicare
system. This represents societal rather than individual
barriers to access. Even among married women, variability
in employment of the spouse may contribute to inconsistent
access to sources of health insurance (Rubin, 1994).
Societal barriers contributing to access disparity

The breast cancer screening literature clearly
identifies not having a regular health care provider and as

poor provider communication as barriers to access. Viewed

40

as a function of the larger society, these factors indicate
the effects of discrimination and poverty (Baca Zinn &
Dill, 1994).

Racial differences in access to health care (from a
historical and societal perspective) may provide insight
into the disparity experienced by minority women as related
specifically to employment. Women, and particularly
minority women, historically have been the victims of
discriminatory practices in employment, a form of
institutional racism. Not having health insurance because
of unemployment is one barrier to recommended screening
procedures. The lack of access to employment and cancer
screening may be related to institutional racism.
Institutional racism contributing to access disparity

Franklin (1991) describes the application of
institutional racism and the resultant dominant/subordinate
nature of institutional racism as affecting the roles
played by African American and Whites in the work place.
Institutional racism implies three ideas. One, there is a
dominant group with power over another group and an ability
to affect their means. Two, color is pejorative to the
dominant group. Three, there is a sense that behavior
exhibited by African Americans and Whites is evaluated

differently (Franklin, 1991). Through institutional

41

racism, there is an appearance of integration among African
Americans and Whites because they work in the same
location. Yet, under institutional racism few African
Americans experience upward mobility, and many find
themselves locked in lower level jobs (Franklin, 1991).
There is evidence of institutional racism toward
African American women. In the United States, citizens
receive rights and responsibilities from group membership
(e.g., old age pension, social welfare, and free public
education). Race is constructed along bloodlines, with
members of racial groups experiencing differences in the
distribution of these rights (because of racial segregation
that reproduce social inequalities). As an example,
African American women experience differences in the
entitlement criteria for Social Security resulting from
institutional racism and gender-ideology. That is, race
was a factor used to exclude occupational categories
covered by Social Security. These included agricultural
and domestic workers, occupations often held by African
American women. Consequently, African American women
experience less access to income and benefits (Collins,
1998a). Therefore, African American women experience
institutional racism in two ways. First, because they

occupy low-level jobs with poor benefits, they have less

42

access to health insurance. Second, because they do not
receive Social Security benefits, they have less access to
income needed to pay for health care.

Institutional racism is one explanation for the
disparity in access to breast cancer screening experienced
by women in minority groups. In addition to having less
access to jobs with adequate health insurance benefits, the
health delivery system itself practices a form of
institutional racism. The organization of health delivery
systems is such that providers are dominant and patients
are subordinate. Add to that the fact that the majority of
providers are White and male, and the dominant/subordinate
nature of health care is even more pronounced. While
African Americans will purchase services from White
professionals (Franklin, 1991) it is unclear if minorit
women are reluctant to seek health care advice about
personal matters (such as breast care) from a group of
individuals historically viewed as oppressors.

Reasons for the disparity in access to breast cancer
screening relates to access to adequate health insurance, a
direct result of poor access to high paying jobs. Women
with low income are less likely to have access to a regular
source of health care and are less likely to afford out—of—

pocket costs of obtaining comprehensive care. The

43

literature would suggest that White women would participate
in screening with fewer issues. An exploration of the
social origins of race and the concepts of individualism
and collectivism may be beneficial in understanding the
differences experienced by White and African American
women.

Social origins of race

While the purpose of this research is not a thorough
exploration of race it is important to understand that race
is socially and historically defined. Groups typically
identified as White (Irish) were described as barbaric and
savages. Africans came to the colonies as early as 1619
with their position in society similar to other servants,
evidence of a lack of a uniform attitude toward Africans.
All servants and all poor, regardless of color, were
treated badly and were exploited in colonial America
(Smedley, 2001).

Colonial leaders were the first to separate the
European poor from Africans and Indians as a way of
creating a buffer between classes of people. This first
division set the precedence for the ideology of race.
Although gradual in nature, the institutionalization of
slavery resulted from the self-interest of European

Americans whose focus was the development of wealth

44

 

(Smedley, 2001). As described by Peter Fryer, "Racism
emerged in Britain in the eighteenth [century], as the
ideology of the plantocracy, the class of sugar-planters
and slave-merchants that dominated England's Caribbean
colonies. It emerged, above all, as a largely defensive
ideology--the weapon of a class whose wealth, way of life,
and power were under mounting attack" (Smedley, 2001, p.
15).

Myths about Africans as a distinct race emerged as a
rationalization for slavery (Smedley, 2001) with the
physical characteristics of Africans as indicative of an
inferior class of people. Race, therefore, began as a
"folk" idea rather than a derivation of science.

Goodman {2001) described six reasons why racial
science is wrong. It is the sixth reason that is most
pertinent for this research. That is, conflict exists
between biology and lived experience. Underlying reasons
for racial differences in health (environmental exposures,
access to medical care, diet) often go ignored. Conditions
of life rather than racial differences must be examined
rather than using race as a proxy for health variations

(Goodman, 2001).

45

“Whiteness”

The category “White” describes the majority culture
and norms within the United States. Yet, few White people
see themselves as White or can articulate the attributes of
“Whiteness” that contribute to the norm (Dutton, Singer &
Devlin, 1998). Understanding the experience of non—Whites
requires an awareness of the racial attitudes of Whites and
feelings of Whites (Parker, Moore & Neimeyer, 1998) that
may influence the process of participation in screening.

Helms (1984) found that members of the White majority
culture could better understand the experience of others if
they understand their own racial identity. The staged
development of racial identity begins with the first stage
of contact that is marked by a naive View of oneself as a
racial being and color-blind attitude about racial
differences. The second stage is disintegration, which
involves an awareness of the implications of race
(sociopolitical), and the benefit experienced by Whites as
a result of being White with fear about not being accepted
by those who benefit from racism. The third stage involves
reintegration, characterized by anger toward African
Americans, denigration of blackness and an idealized vision
of those things perceived to be White. The fourth stage is

the pseudoindependent stage, characterized by an

46

intellectual understanding of African Americans with
acceptance of those who seem to be like Whites. Autonomy
is the final stage, with Whites internalizing a positive
and non-racist self—identity and an appreciation for
cultural similarities and differences. Involvement in
interracial interactions is also a characteristic of
autonomy (Helms, 1997).

While beneficial in stressing the importance of
understanding White racial identity and the benefits
afforded by group membership, intragroup differences remain
obscure. Certainly, the data suggest that White women are
more apt to participate in cancer screening and to receive
early stage cancer diagnoses. Yet, there are women who
fall outside the norm, including women with both high
levels of education and income. This suggests family
ecosystem and life course experiences may influence the
decision to participate in screening. The importance of
this idea is to focus attention on factors other than
education, income, and minority group status that affect
breast cancer screening, to adequately address the needs of
individual women. These factors may include issues related

to gender and roles of women within the family.

47

White women and family roles

In the United States, the traditional family is
described as a married couple with children (Giddens,
2003). Prior to the industrial revolution, the family was
an economic unit that functioned to support an agricultural
economy. As part of this family structure, inequality among
men and women existed, with women having few rights
(Giddens, 2003). Sexuality was predominately a function of
reproduction. Victorian norms regulated women's roles--
virtuous, subservient, and unequal to men (Giddens, 2003).
While women's roles have changed, inequality related to
gender in American Society remains. Jackson (2003)
provides examples of this inequality ranging from inequity
in employment opportunity to inequity in laws. Few women
hold high political offices and the "glass ceiling" in
employment continue to exist. Piestigious fields, like
higher education, are largely male oriented. Costs for
women in divorce exceed costs for men. Women experience
sexual harassment and fear of rape remains even with laws
to control both. Finally, there exists a cultural image
that perceives men and women as different (Jackson, 2003).
Black women and family roles

Historically, the African American family is a product

of slavery. The prevailing family structure during slavery

48

was conjugal and helped to provide stability (Weddle—West,
2000). As described by McCray in the article by Cochran,
et al., (1999), African American women have held multiple
roles in the family. These roles can be attributed to
African cultural heritage, religious beliefs, caretaking
roles resulting from socioeconomic barriers, and factors
associated with family preservation. African American
women have worked to contribute to family income and care
for relatives and fictive kin. As a result, large numbers
of multigenerational families exist in African American
communities (Cochran, et al., 1999).
Culture and differences

Understanding cultural differences within and among
groups is difficult. Sowell (1994) believes the difficulty
arises from the fact that "Cultures involve attitudes as
well as skills, languages, and customs. Attempts to
measure cultural differences between groups by attitude
surveys miss the crucial point that culture is expressed in
behavior, not lip service" (p.10). Groups’ values related
to culture become evident in the choices that are made and
the sacrifices actuated in reaching the goal (Sowell,
1994).

Sowell (1994) also believes that distinctive

characteristics of a group are separable from identity with

49

the group. Individuals who do not have direct cultural
roots or connections with the social experience of the
group take on an exaggerated kinship with the group
(Sowell, 1994). That is, it is "a common social phenomenon
around the world that those who have lost a culture have
often been its most strident apostles" (Sowell, 1994, p.
28). Serious social consequences that arise from
exaggerated cultural identity include the danger of
leveraging extreme fringes within a group, and inhibiting
the cultural advancement of "lagging" groups. As a result,
negative consequences include differences in education,
income, and other social factors (Sowell, 1994).
Collectivism ver us individualism

Triandis (1995) describes culture in relation to
society as memory is to individuals. Within this context,
societies use what has worked in the past as a tool in the
same way that individuals use memory. Tools that become
part of culture include shared beliefs; attitudes, norms,
roles and values, and these tools form a subjective culture
(Triandis, 1995). Implicit within this idea of culture are
“unstated assumptions” that “mwe are bound together into
tight groups of interdependent individuals is fundamental
to collectivism and that we are independent entities,

different and distant from our groups, is fundamental to

50

individualism” (Triandis, 1995, p. 4). Broadly, cultural
differences may be related to whether a culture is
collective or individual.

Collectivism is a "social pattern consisting of
closely linked individuals who see themselves as parts of
one or more collectives (family, co-workers, tribe,
nation)" (Triandis, 1995, p. 2). As a result, personal
goals are overlooked in preference for the goals of the
group. Individualism is a "social pattern that consists of
loosely linked individuals who view themselves as
independent of collectives (Triandis, 1995, p. 2). The
focus of individualism is the personal needs, rights and
desires of the individual over the group.

The research toward defining collectivism and
individualism has become more complex (Westerhof, Dittmann-
Kohli & Katzko, 2000). Typically, in cross-cultural
research, cultures are characterized in terms of values
where aggregates of individuals become the unit of analysis
(Westerhof, et al., 2000). From this perspective, cultures
become a statistical average of the individuals (in the
aggregate) and receive a value based on that average, such
as, a culture of individualism versus collectivism.

Culture (taken as a statistical average of an aggregate of

individuals) becomes an independent variable influencing an

individual. Analysis of individuals within a culture
reveal “meaning within individuals” that cannot be revealed
through statistical methods (Westerhof, et al., 2000).
Therefore, individuals and culture are inseparable. In
this manner, culture is realized through individuals and
individuals experience their lives through acculturation
(Shweder & Sullivan, 1993). As described by Westerhof, et
al., 2000:

It follows that if n38 wants to understand in

more detail what individualism or collectivism

might mean, one needs to examine the unit of

reality wherein that attribute lies: within the

individual. This allows us to be more explicit

both about the “statistically average” meaning of

the term, as applied to the aggregate, while at

the same time being able to point to the richness

of meaning of the attribute as assigned to the

object of study within which it resides: a

bottom-up focus on the individuals as the unit of

analysis (p. 651).

Historically, African societies are collective and the
U.S. society is individualistic (Triandis, 1995). The
extent that a collective view of culture among African
Americans and an individualistic view among Whites in the
United States influence decisions related to health care is
unknown. Lukwago, Kreuter, Bucholtz, Holt, and Clark
(2001) have developed a brief scale to measure collectivism

among African American women related to colorectal cancer

screening. The authors (Lukwago, et al. 2001) suggest that

collectivism is associated with health-related beliefs.
Through an understanding of collectivism as a cultural
attribute, researchers might develop interventions that are
more appropriate to address health disparities (Lukwago, et
al., 2001). Rather than using a scale to measure
collectivism versus individualism, this research will
explore whether or not women express individualistic or
collective attributes in describing their decision whether
(or not)-to participate in breast cancer screening.

Summary

The literature demonstrates that membership in
racial/ethnic groups and women who lack health insurance
coverage are more likely to be diagnosed with late stage
breast cancers than White women with higher education
levels and higher incomes. While breast cancer screening
rates have improved, underserved women continue to face
barriers to regular screening.

Barriers to cancer screening such as lack of health
insurance, a regular source of health care, knowledge, and
transportation have been mitigated through a variety of
programs. However, disparities in access to appropriate
screening services remain among underserved populations.
Viewing the context in which cancer screening occurs while

considering the role of race, class, and gender offers some

53

insight into the ongoing disparity despite improved
screening programs.

Family health and women as the guardians of health
within a family provide some understanding of how health
information is disseminated with the family system. Little
is known about the influence of family ecosystem factors
associated with cancer screening participation. Even less
is known about the influence of life course transitions and
events experienced by women and their decision to
participate in screening.

Finally, we know little about the influence of
cultural attribute idifferences HJI terms (fl? collectivism
and individualism) related to breast cancer screening.
Improving breast cancer screening is a complex task.
Therefore, this research will explore family ecosystem and
life course factors associated with breast cancer screening
and evidence of cultural attributes (collective versus

individual) among White and African American women.

54

Chapter 3

RESEARCH METHODS
Research Design
The purpose of this qualitative study was to explore
family ecosystem and life course factors associated with
perceptions of health and breast cancer screening. This
study used a case study approach to gain a better
understanding of the experience of White and African
American women and their participation in breast cancer
screening. Congruent with this purpose, the research
questions introduced in Chapter I include:
1.How do women describe their health needs in relationship
to their family?
22.Where do women learn about their breast health needs?
Z3.What family related factors do women consider when making
the decision to participate (or not) in breast cancer
screening?
i4.What are the effects of life course transitions and
events experienced by women on their participation in
breast cancer screening?
5.How do women perceive their family relationships, life
course transitions and events as influential in their

decisions to participate in breast cancer screening?

EL What factors described by women in their decision to
participate (or not) in breast cancer screening can be
described as culturally specific attributes?

Data collection was conducted using case studies. The
case study is bounded with patterned behavior (Stakes,
2000). This boundary presents the opportunity to learn
something specific about the participants described in the
case study. The sample consists of ten women aged 40-55
years who are employed and have health insurance and have a
minimum of a high school education. Participants examined
their experience with health, breast cancer screening and
the relationship between their screening experience and
family ecosystem factors, life course transitions and
events within their family of origin and their current
family.

Pqpulation and sample

Participants in this study were solicited through a
variety of means including contacting teachers,
professionals, and acquaintances of the researcher. The
rationale for soliciting in this manner was to draw from
groups of women who have a higher level of education, have
higher income levels, and access to health insurance in an
effort to avoid factors associated with low screening

participation (low income and low education)(Mikey, et al.,

56

1997). It is believed that the experiences shared by these
women should reflect family ecosystem, beliefs, and life
course factors rather than factors associated with
economics and education.

Participants in this study share current similarities
in life experiences (in terms of employment, income, and
insurance) and exposure to media representations of
political views and current world events that may influence
decision-making. None of the women in this study were
raised in the same family or community.

Site of the study

The location of the study was Kent County and the
surrounding community, in western Michigan. The county has
a population of 560,000 people and a racial/ethnic
distribution of 83% White and 7.9% African American (Census
data, 2000). Each participant deferred to the
recommendation of the researcher for location of the
interview. The location was selected based on access to
facilities that would afford privacy, comfort, and
convenience. As a result, five of the interviews were
conducted in a church. The church was a familiar location
for the participants, it was easily accessible, and was

available for use without charge. The other five

57

interviews were conducted at a private health facility
during non-business hours.
Sampling procedures

Purposive sampling techniques were used to select
initial participants. Purposive sampling, ensures the
researcher of getting participants who have the specific
characteristics of interest in the study and who are
willing to discuss the topics. The sampling is not
concerned with generalizability or representativeness,
rather in understanding “the conditions under which a
particular finding appears and operates” (Huberman & Miles,
1998, p. 204).

A list of potential participants was constructed based
on study criteria snowball techniques for all participants.
The criteria for the sampling included age (40-55 years),
race/ethnicity (5 White and 5 African American), gender
(women), education (total years), marital status (married,
divorced, single), children (currently or previously living
in the home), and insurance (commercial or private). As it
turned out, the researcher was acquainted with all
participants, either due to a friendship or past working
relationship.

Participants were contacted twice. The first contact

was by telephone or in person to discuss the nature of the

58

research, issues related to confidentiality and anonymity,
and possible dates and locations to conduct the interview.
Before the interview, a follow-up call was placed to
confirm the time, date, and location and to determine the
participant’s willingness to continue.

Data collection and procedures

Each participant completed a consent form (Appendix A)
designed to explain the rights of the participant as a
research subject and to obtain consent for audiotaping, and
for the use of direct quotes. Each participant was coded
for anonymity with a pseudonym and is referred to
throughout the study with the pseudonym. The researcher
conducted all interviews, the interviews were strictly
voluntary in nature, and the participants were not paid for
their time.

After obtaining approval from the University Committee
on Research Involving Human Subjects (UCRIHS), participants
were recruited and interviewed. Each interview took one to
two hours to complete. All but one of the interviews was
completed in one session sitting. At all times,
participants had an opportunity to discontinue the
interview or to refuse to respond to particular questions.

All interviews were conducted in English.

59

Because of the nature of the questions, there existed
the possibility of participants experiencing social
embarrassment in disclosing names. Therefore, each
participant had written and verbal assurance that the data
only would be presented only in coded format and that the
researcher would clarify with the participant any
perceptions recorded. Each participant will receive a copy
of the findings as a way of acknowledging her important
role in the research process.

The primary methods of data collection were semi-
structured interviews and ecomaps. Unlike structured or
unstructured interviews, the semi-Structured format allows
the researcher to ask a set of specific questions and
explore responses using probes. The role of the researcher
becomes somewhat directive (Fontana & Frey, 2000) using
this methodology. In a structured interview, the
interviewer asks a series of questions with limited
response categories, leaving little room for variation in
the response. The structured interview is used to capture
precise information for ease in coding. In the
unstructured interview, the respondent is asked to tell a
story or respond to an open-ended question without further
direction from the interviewer. In the semi-structured

format, the interviewer listens for opportunities to

60

explore an idea or thought in greater depth while asking
the same key questions of all respondents. The semi-
structured format requires the researcher to be attentive
and an active listener in directing the flow of the
interview session.

Ecomaps (Appendix B) allow the participants to
identify relationships within their lives. Unlike a
genogram that depict families over time, an ecomap pictures
families spatially (Hodge, 2000). For example, respondents
were asked to identify their relationship to the categories
such as church, work and employer, listed on the ecomap, in
terms of how those categories act as support systems, also
the type of relationship, and the directional flow of that
relationship. Most of the respondents had never used an
ecomap so they were allowed to ask questions for guidance
in the use of the key. Respondents also were given the
opportunity to add additional categories if necessary.
Completed ecomaps demonstrate systems and relationships
that are important to the family and the character of the
relationships (Hodge, 2000). The researcher used this
information to further explore the effect of the
relationships on the decision-making process.

Each interview was audio-recorded using standard

cassettes and transcribed verbatim, by a service hired by

the researcher. In addition, the researcher listened to
each interview and compared the audiotape with the written
version. Confidentiality was maintained by using the
chosen pseudonym as a descriptor in conversion and when
coding the tape for identification purposes. For example,
on the audiotape label, each participant was first
described with a letter denoting White or Black (W or B), a
number (01 through 05) and the pseudonym (W01 Bambi, BOl
Coffy). No discrepancies between the transcribed and
audiotaped versions of the interviews were noted.
Participants were informed that in the analysis of the
interviews that they might be contacted for content
clarification. The original audiotapes will be kept in a
locked cabinet for three years, and all copies of
audiotapes used in the transcription process were
destroyed.

In addition to the semistructured interview, the
researcher made field notes concerning the interview
context. The notes recorded the affective state of the
participant and any nonverbal responses to questions that
were not recorded with the audiotape. The field notes were

recorded and completed immediately following the interview.

62

Instrumentation

Although the interviews were conducted using a
semistructured format, a protocol of core questions guided
the interview (Appendix C). The interview questions were
organized under the headings of family of origin, current
family and reflection. Under the family of origin
category, participants were asked to reflect on their
family of origin when answering the questions. Under the
current family category, participants were asked the same
questions, but were asked to think about how the questions
apply to their current family. Finally, within the
reflection category, participants were asked to compare and
contrast how their experiences in their family of origin
differed from their current life experience. The use of
open-ended questions fostered individualized participant
responses. Researchers use open-ended questions to elicit
responses that allow participants to describe their world
in their own words (Fink, 1995). The guide served to
direct the interview and to ensure that all questions
needed to meet the research objectives were asked.

Each interview started with casual dialogue and a
review of the purpose and expectations of the interview.
Time spent in casual conversation was minimal in all cases

because the researcher was acquainted with each

63

participant. The participant was encouraged to provide
expanded responses to the questions.
Qualitative data recording, management and analysis

Each audiotape was transcribed using a professional
transcription service. The original audiotapes were dubbed
and the dubbed versions were used by the transcriptionist.
Confidentiality was maintained by coding each audiotape
with the participant’s pseudonym and the researcher’s
contact information. No reference to the participant’s real
name was made within the interview.

After transcription, each interview was transferred to
a qualitative analysis program (Qualitative Solutions &
Research NUD*IST Vivo). The QRS NVivo program was selected
because of its reported ability to edit, visually code, and
link documents during their creation, coding (See Table 1
for coding schemes), filtering, management and searching.
Field notes were entered in the system as a memo document
under each participant’s pseudonym. Ecomap data were
entered as attributes for each participant and coded with
the participant’s pseudonym. Attributes appear within the
program as an aggregate table by participant. Each
participant was represented within the QRS NVivo program,
as a set comprised of the interview, field note memo and

ecomap. The coding process began with the first transcribed

64

interview and progressed when each subsequent interview was
transcribed.

The initial coding scheme (Table 1) was based on the
conceptual model and research questions. Within the QRS
NVivo program, a variety of approaches to coding can be
used. For this study initial coding involved broad-brush
coding (Bazeley & Richards, 2000). Broad-brush coding is
the first step in the process of coding, where broad areas
of data are coded into nodes (family ecosystem, life
course, cancer related). Then the broadly coded nodes were
recoded into finer distinctions (discussions, decision-
making, health beliefs). All of these nodes were reviewed
and coded again into even finer categories (access issues,
topics of discussion, adages, sayings, and home remedies,
knowledge, beliefs, values). The QRS NVivo system allows
coding under nodes that are later grouped under trees.
Initially, in the broad-brush coding there were over 100
nodes that eventually were organized under the twenty trees
or coding schemes identified in Table 1. The data were
explored for emerging patterns and themes that will answer

the research questions.

65

Table 1

Coding schemes

 

Family of Origin Codes

 

FOH=Family of origin health

FOBC=Family of origin breast cancer

FOHD=Family of origin health discussions
FOBCD=Family of origin breast cancer discussions

 

Current Family Codes

 

CFH=Current family health

CFBC=Current family breast cancer

CFHD=Current family health discussions
CFBCD=Current family breast cancer discussions

 

Life Course Codes

 

LCTFOA=Life course transition family of origin
LCTCF=Life course transition current family

 

Family Relationship Codes

 

FORHD=Family of origin relationships health decisions
FORBCD=Family of origin relationships breast cancer
decisions

CFRHD=Current family relationships health decisions
CFRBCD=Current family relationships breast cancer decisions

 

Reflection Codes

 

FonHD=Family of origin current family health decisions
FonBCD=Family of origin current family breast cancer
decisions

 

Cultural Attributes

 

FOHB=Family of origin health beliefs
FOBCB=Family of origin breast cancer beliefs
CFHB=Current family health beliefs
CFBCB=Current family breast cancer beliefs

66

Ecomaps were entered as document attributes and coded
using the same coding scheme. Triangulation was
accomplished using both the interview and the ecomap for
data collection to confirm the information obtained from
the respondents. Tapes were listed to by the researcher
and compared with the transcriptions. Field notes were
reviewed and compared with statements made by the women.
The field notes demonstrated that the recording of non-
verbal responses confirmed what the women said especially
when discussing “taboo” topics with their mothers, like
breasts.

Qualitative Research

Role of the researcher

Marshall & Rossman (1999) suggest that qualitative
research requires consideration of participantness,
revealedness, intensiveness/extensiveness, and focus of the
study related to the role of the researcher.
Participantness refers to the degree of actual
participation in the study by the researcher. The
researcher conducted all of the interviews and completed
the analysis.

Revealedness refers to the extent to which a study is

known to the participants. The role of the researcher and

67

the purpose of the study were known at all times throughout
the study to all participants.

Intensiveness/extensiveness is the amount of time
spent in the setting on a daily basis. The setting in this
study is defined broadly in terms of the location (county)
where the sample is selected and the actual location where
the interview takes place. Therefore, the extent of time
the researcher spends in the setting is limited to the time
it takes to complete the interview. For this study,
participants deferred to the researcher for suggested
settings, with some selecting the same setting.

The role of the researcher depends upon the focus of
the study. The focus of this study is case specific and
intrinsic. This type of study is used because a case in
itself is of interest rather than attempting to understand
an abstract concept or build theory (Stakes, 2000). In a
case study, the researcher looks for the particular nature
of the case. In this study, each participant represented a
case with similarities and differences to each of the other
cases.

Objectivity, validity and generalizability

A “reconceptualized” vision of critical theory

criticizes rationalistic scholars as obsessed with issues

of technique, procedure, and correctness while forgetting

68

the humanistic aspect of research (Kincheloe & McLaren,
2000). By taking this rationalistic approach, fact is
separated from value with a resultant loss in understanding
the value choices involved in the factually described
situation (Kincheloe & McLaren, 2000). However, even when
using a qualitative approach it is necessary to examine the
objectivity, validity and generalizability of the data
collected.

Objectivity

Polit and Hungler (1995) define objectivity as “a
desired quality of research using the scientific approach;
refers to the extent to which two independent researchers
would arrive at similar judgments or conclusions” (p.648).
While objective approaches use conceptual categories
derived by researchers to structure the analysis,
subjective approaches use the participants’ own constructs
to frame the study (LeCompte & Preissle, 1993).

Qualitative research requires the observer to
recognize and acknowledge subjectivity—conscious and
unconscious sources of bias (Jansen & Peshkin, 1992).
Rather than denying bias, the qualitative researcher brings
these biases forward to understand them as part of the
methodology while acknowledging them when drawing

conclusions from the collected data. Recognizing and

69

reflecting on personal biases (that result from personal
experience) when reporting data contributes to a higher
degree of accuracy in qualitative research (Jansen &
Peshkin, 1992).

Researcher bias and assumptions

From a qualitative viewpoint, it is important to
acknowledge my personal biases. I grew up in a family in
which health services were used in response to illness or
injury. My family of origin always had health insurance, so
I never experienced making decisions about the use of
health care based on cost related factors.

While we never discussed health as a concept, I grew
up knowing that I should eat “healthy” (although that was
not clearly defined), that cleanliness was important
(although I didn’t know why), and that I should go to the
dentist (hating every moment of the visit). I also
remember getting vaccinations, receiving the first polio
vaccine, and getting fluoride treatments. The polio
vaccines and fluoride treatments were conducted as citywide
efforts to combat what I now know to be public health
issues. These programs were offered through the elementary
school systems, leading me to believe that they were age

based programs. In my family of origin, my mother was the

70

gatekeeper to the health care system. I have no memory of
my father’s involvement in health related decisions.

From the sixth grade through adolescence, what I
learned about breast “health” was not from my mother, but
from school films and peers. I remember learning about
physiologic function of the breast as a method to feed
babies and the sexual function of the breast from my
friends. Breast health and breast cancer were not topics
of discussion in my family of origin.

My first memory of cancer was my paternal grandfather
dying of lung cancer and having oral cancer. I distinctly
remember the way his lips looked and the terrible cough
that he had. I do not remember feeling threatened or afraid
of cancer from this experience, and I have little memory of
my parents’ response to his death.

My second and most vivid memory of cancer was a
classmate in the first grade. She had cancer of the bone
in her upper arm. I remember adults talking about how the
cancer was found (she was hit in the arm with a softball)
and that her arm was amputated. I can still visualize her
entering the bus after the amputation, with only one arm.
Again, I don’t remember feeling threatened or afraid, but I

do remember feeling curious. I also remember feeling sad,

71

not because I missed her, but because everyone else was
sad.

My third and most memorable exposure to cancer as a
child was my grandmother's second husband who died of
pancreatic cancer within two years of their remarriage. I
remember feeling sad because my grandmother felt so alone,
but I did not feel afraid.

All of these cancer-related occurrences contributed to
vague and superficial discussions about cancer in my family
of origin. I remember my mother saying, “You know if
someone has cancer and they open them up to the air, the
cancer will just spread”. I remember my first fear in
relationship to this comment; the fear of hopelessness.

In my family of origin, there was no discussion of
prevention and screening related to cancer except in the
use of chewing tobacco as a cause of cancer. I also have
memories of my mother going to the doctor for “women’s”
health, but I never knew what that meant. I remember that
I felt uncomfortable discussing “female” issues with my
mother, so my knowledge base came mostly from my peers.

It was not until I was an adult and had finished
nursing school that I gained awareness and eventually a
level of expertise about cancer screening and prevention.

My mother’s diagnosis of breast cancer made the topic of

72

cancer more relevant in my current family. She cared for
my children on a regular basis through her treatment, so my
daughters asked questions and were included in discussions
of cancer. I remember feeling angry with her doctor for
failing to biopsy her lump for four years; angry at my
mother for not insisting that the lump be biopsied; and,
angry at myself for somehow failing her. I also became
aware of whom she included in her “consultant” support
system and decision-making process. It was my father and
her doctor. I don’t know if she discussed this with her
friends, but I know that she never discussed this with my
sister or myself; not wanting to “bother” us.

All of these memories were present in my thoughts as I
approached this research. With these thoughts in mind I
made some assumptions about the women I would be
interviewing. I assumed that all would have experienced at
least one person having cancer in their family of origin,
providing them with some memory of how cancer was discussed
and dealt with, and who was involved in the decision making
process. I also assumed that women would be the
gatekeepers for health related decision making within the
families of origin, but that in their current families, the
health related decision making would be mutually shared

with spouses or significant others. I assumed that each

73

woman bring memories from their families of origin that
were beliefs about cancer and that cancer may or may not
have been feared. I also assumed that even though these
women had health insurance, they would still take into
consideration family relationships in making the decision
to participate in breast cancer screening. I assumed that
family relationship considerations would include scheduling
and procrastination rather than cost (among individuals who
did not consider screening) and participants who screened
wished to identify cancer early and be “around” to see
their grand children grow.

These biases and assumptions were present in the
thought processes used to develop the research questions.
As will be described in Chapter IV, some of my assumptions
were appropriate and some were not.
validity and generalization

Polit and Hungler (1995) limit the definition of
validity as the “degree to which an instrument measures
what it is intended to measure” (p. 656). Others refer to
validity as the trustworthiness of inferences drawn from
the data (Eisenhart & Howe, 1992). Shavelson (1996)
expands the definition to mean “the extent to which the
interpretation of the results of the study follows from the

study itself and the extent to which the results may be

74

generalized to other situations with other people” (p. 19).
Generalizability refers to the “degree to which the
research procedures justify the inference the inference
that the findings can be generalized from the sample to the
entire population" (Polit & Hungler, 1995, p. 642).

In qualitative research, internal validity refers to
the justification of causal relationships (Johnson, 1997)
and the mutual understanding of the meanings of conceptual
categories between the participants and observer (LeCompte
& Preissle, 1993). Threats to internal validity in
qualitative research (as in quantitative research) include
history (changes in the social scene studied) and
maturation (changes in individuals). Because the
interviews were conducted in one session, history and
maturation were not issues in this study. Methods
triangulation (more than one method of research) and data
triangulation (the use of multiple sources of data in a
study) improve internal validity in qualitative research
(Johnson, 1997). The use of data triangulation in this
project should insure internal validity. Mutual
understanding of the meanings of conceptual categories
between the participants and the researcher was achieved
using ecomaps. During and after the completion of the

ecomaps, participants were asked to validate their

75

descriptions rather than the researcher making assumptions
about their intent.

When discussing generalizability related to
qualitative research, four constructs affect the
credibility of studies for cross—group comparisons. These
constructs include selection effects (constructs specific
to a single group); setting effects (constructs developed
that are a function of the context under investigation
rather than the context itself); history effects (effect of
unique historical experiences on some groups and not
others); and, construct effects (differenCes in meanings
and terms among different groups) (LeCompte & Preissle,
1993).

Firestone (1993) suggests that there are alternative
arguments for generalizing from data applied to qualitative
research. One of these alternatives is the case-to-case
transfer where an idea is adopted from one setting to
another. Four criteria (material facts, appropriateness,
reason for the decision, and generality of the decision)
are used as precedents to compare with the current case.
If the idea fits (material facts), seems fair or right
(appropriateness), the use of the idea is reasonable for
the case (reason for the decision), and the precedent

decision was fundamental (generality of the decision), then

76

generalizing is possible but the burden of responsibility
for generalizing falls to the reader.

It is not expected that the findings from this study
will be generalizable, but rather used to develop further
research and understanding of health related decision
making and implications for breast cancer screening.
However, it is also expected that the cases studied will
have enough similarity when applying case-to-case transfer
concepts and the readers may find similarities in their own
experiences.

In this research, objectivity involved the use of a
conceptual model as a framework to compare the qualitative
responses of the participants. From the conceptual
framework, coding schemes were designed and the data were
coded. Validity from a qualitative sense was addressed by
obtaining participant opinions and using verbatim
descriptions. In summary, researchers have options for
ensuring the defensibility of qualitative research by
attending to qualitative definitions of objectivity,
validity and generalizability.

Summary
While medical literature abounds with quantitative
descriptors of participants in breast cancer screening,

little is known about family ecosystem and life course

77

factors associated with the health related decision to
participate in breast cancer screening. Qualitative
methods provided an option for exploring these factors
within the context of the meaning of health, cancer and
screening on the part of the patient. Clearly, well-
constructed qualitative research is objective, valid, and
generalizable when paying close attention to adequate
descriptions of the participants involved and
identification of investigator biases. In this study,
qualitative methods provided a unique opportunity to
explore health and breast cancer screening among a selected
group of White and African American women related to family

ecosystem and life course factors.

78

Chapter 4

RESEARCH FINDINGS

This study explored the influence of learned behaviors
on health decision—making in the context of life course
events and the family. These learned behaviors result from
family beliefs and values about health with implications
for the use of breast cancer screening. By defining
culture, in this study, as “a complex ethnographic
collection that includes learned group behavior (Clifford
1988)”, each research question seeks to understand the
health related behaviors learned within the family of
origin that influences current behaviors. These health
behaviors may in turn affect the use of breast cancer
screening.

The interviews provided insight into the influences of
the meaning of health and cancer in the women's families of
origin and the decision—making related to their current
health and views of breast health. This chapter begins with
descriptions of participants, followed by answering the
research questions associated with each objective.
Questions posed to participants were related to their
family of origin, their current family, or comparisons

between the two.

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Demographic descriptors of participants
Table 2 contains demographic descriptions of the
participants. The majority of the participants were
currently married (60%) or divorced (30%). One of the
participants lived for 8 years in a common law marriage and
was included in the sample. Five of the participants
currently had children living in the home who were between
the ages of 11-18. Six of the women had children living in
the home that were older than 18 and either in college or
serving in the armed forces. One participant lived only
with her spouse, and one participant lived alone but had
three deceased children. Three participants graduated from
high school but did not attend college, three attended
college for 2-4 years, one completed a Master’s degree, two
were in the process of completing Master’s degrees, and one
participant had a PhD.
Overview of participants

Participants offered a unique viewpoint of the
relationship of their family of origin, current family, and
comparative look at health and breast cancer. This section
includes a brief overview of the women and the family

experiences that have shaped their viewpoints.

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Table 2

Descriptors of Participants (N=10)

 

 

 

 

Variable n %
Marital Status Married 6 60
Single, Divorced 3 30
Single, Common-law 1 10
Race/ethnicity White 5 50
African American 5 50
Household comp. Children age 11-18 5 50
Children >18 6 60
Spouse only 1 10
Living alone 1 10
Employment Working Full-time 10 100
Mean St. Deviation Range
Age (yr./mon.) 47.40 3.5 40.25-51.9
Education (yr.) 15.9 3.88 12-24.5

Kim, a 40 year-old African American woman, had been
married for nineteen years and had three children aged 11,
15 (sons) and 20 (daughter). Kim’s father was a Baptist
minister and her parents worked as foster parents (in West
Michigan). It was from this foster caregiving experience
that Kim was adopted. Within her current family, Kim
described herself as an “involved parent”, participating in
her children’s school activities as well as volunteering in
church and work events. Kim, self-described as “devoted to
her family” and “conscientious” in her employment, felt
pulled between the two, leaving little time for herself.
However, she was attentive to her personal health care and

was the point person for family health in her home. Field

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notes describe her demeanor as exuberant, cheerful, and
willing to share information. She maintained good eye
contact throughout the interview, participating because she
thinks, “research is a good thing”. Kim is employed as an
outreach worker at a local health facility, unrelated to
cancer prevention and screening. Kim selected her middle
name as a pseudonym.

Coffy, a 44—year-old African American woman, was the
only participant who had experienced the death of a child.
In fact, all of her three children died before the age of
three. The death of the children led to the dissolution of
her marriage through divorce. Coffy was raised in Chicago,
in a primarily African American community and her parents
were divorced. Coffy considers her mother and other female
relatives as her family, discussing all health-related
decisions with them. Field notes describe Coffy as being
strong, open, and resilient. Coffy also was the one
participant who described the role faith has played in her
life, supporting her through the deaths of her children and
her recent bout with breast cancer. Coffy was the only
participant to have had a personal experience with breast
cancer. Because the cancer was found in the earliest stage
(in situ), the treatment involved only a lumpectomy. When

asked to describe the relationships with those she

considers part of her support system she wrote, “As a whole
my relationships are good. I can deal with a little stress
from time to time in my relationships, but if they become
too stressful or conflictual then I cut them off”. Coffy,
the most educated of the participants, is an assistant
professor at a local university. Coffy selected her
pseudonym to honor the 1970’s sitcom detective who was the
first African American female to play such a role.

Sojo, a 47-year-old African American woman, was the
mother of one adult daughter. Sojo’s parents separated in
her childhood, but never divorced. As a result, her father
remained integrated in family events and decision—making.
While never married officially, Sojo was involved in a
common-law marriage that lasted eight years. She described
this experience as one identical to married couples in that
“we had the house, the dog, the station-wagon just like the
Cleaver’s”. Loss of employment on the part of her
significant other and subsequent drug abuse caused the
dissolution of the relationship. However, her ex-partner
remained involved in the life of their daughter, attending
PTA meetings and participating in decision making in a
limited sense. Field notes describe Sojo as being
intuitive and insightful, articulate and willing to share

her life experience. Sojo described health decision making

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within her family as being a shared experience, with an
extended family that includes brothers, her daughter,
cousins, aunts, and uncles. Sojo said that yearly family
reunions involve up to seven hundred relatives from around
the country. Sojo had vivid memories of the adult women in
her life as being strong and powerful in the community
(West Michigan). She had four years of a college education
and was employed (two full-time jobs) as a receptionist and
in the cleaning business. Sojo selected her pseudonym to
honor Sojourner Turner, the famous female African American
Rose, a 47-year-old African American, spoke with a
gentle demeanor as she responded to the questions. Rose,
twice divorced, was the mother of an adult daughter, an
adult son and one teenage son. Two of her children had
seizure disorders and her oldest daughter had
hydrocephalus. Within the past year, this daughter had
brain surgery that nearly resulted in her death. However,
this daughter was planning to graduate from college in the
near future. After the divorce of her parents, Rose’s
mother remarried and moved the family from Chicago to west
Michigan. After that move, Rose remembered feeling lonely,
with few friends, a mother who seldom talked with her
openly, and missing her friends in Chicago. Rose described

the current relationship with her mother as being open and

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loving, and finds that she shared decision making with her
mother and daughter. Field notes describe Rose, as having
difficulty discussing her family of origin; saying her
childhood was not happy. Rose worked at a local bank for
thirteen years and as a result of consolidation and
downsizing, became unemployed. After three months of
unemployment, she found a position as an administrative
assistant in a local health facility. Rose had no formal
education beyond the twelfth grade, but was articulate and
intelligent. Rose selected her middle name as a pseudonym.
Maya, a 51—year-old African American woman recently
remarried after surviving a twenty-year “terrible”
marriage, had two adult children and several grandchildren.
Maya’s parents divorced in her childhood because of her
father’s drinking. Maya remained close to her father until
his death several years ago and was actively involved in
caring for her mother who was struggling with cancer. Maya
was the only nurse involved in this study and was
completing her Master of Science in Nursing. Field notes
described Maya as the participant who discussed or focused
on memories related to racism and ongoing feelings of
racism in her current life experience. She freely shared
these feelings and offered insight into how the experiences

influenced her decision-making. Maya was the primary

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health decision-maker in her current family, offering
consulting to her adult children and mother. Maya was
involved in professional organizations, honor societies and
sororities. She was employed at a local health center in
community outreach. Maya selected her pseudonym to honor
Maya Angelou, the gifted and talented poet.

Bambi, a 46—year-old White woman, had been married for
twenty years to her high school sweetheart and was the
mother of two adult daughters and one teenage daughter.
Bambi lived in the community in which she grew up and
recalled her family of origin as one that was not child
centered, giving her the impression that she should “be
seen but not heard”. She described having a good and open
relationship with her daughters, discussing topics that
were not discussed with her parents in her childhood. She
also described having limited conversations with her
husband about either of their personal health concerns.
Bambi’s parents divorced, and her mother recently
remarried. Field notes describe Bambi as being
lighthearted, willing to share, and insightful. Bambi
graduated from high school and worked for an investment
firm. Bambi selected her pseudonym because she thought it
would be fun and would never again have the chance to be

referred to as “Bambi”.

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Hayley, a 47-year-old White woman had been married for
over twenty-two years and had an adult daughter and an
adult son, both who attend college. Hayley grew up in West
Michigan and worked for her brother in a local
establishment. Hayley grew up in a family with older
sisters and brothers who “assisted” in parenting her.
Hayley described one sister in particular whom she confided
her health related concerns. Hayley described herself as a
procrastinator related to her personal health needs. She
initiated health decisions for her current family but had
few personal discussions with her husband related to
health. Field notes describe Hayley as responding to
questions with brief answers, laughing at some of the
questions, and providing limited insight. Hayley attended
college for two years after high school but did not
complete a degree program. Hayley selected her daughter's
name as a pseudonym.

Cissie, a 49-year-old White woman, was twice divorced
and the mother of one adult daughter. Cissie grew up in an
affluent family in another Midwestern State. She was
accustomed to hearing health-related information because
her mother was a nurse. Although Cissie's father was
deceased, her mother continues to live over three hundred

miles away and Cissie was providing distance caregiving to

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her. Cissie consulted with her mother and daughter for
health related decisions and occasionally, with her
brother. Cissie was described in field notes as exuberant,
insightful, reflective, and expressive. Conversations with
Cissie (non-recorded) included topics that she described as
Marxist and communist based. It was most interesting to
listen to her description of opinions related to the
current political culture. Cissie participated in theater
and was completing a Master of Art degree at a local
university. The pseudonym Cissie selected was a nickname
from childhood.

Amy, a 50-year—old White woman had been married over
twenty years and had two adult sons (one who attends
college) and a daughter in high school. Amy grew up in an
eastern state with both parents and moved to this community
as a young divorcee with a child. After remarriage, Amy
actively participated in schooling events with her children
and community volunteering. Amy consults with her mother
for health concerns and makes health-related decisions for
her children, but not her husband. Field notes described
Amy as open, cheerful and genuinely interested in
participating in this research, stating she was “honored”
to be included in the study. Amy completed high school but

never attended college. She described her current full-time

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employment as an opportunity to get health benefits for her
family. Amy selected the name of her daughter for a
pseudonym.

Yvonne, a 50-year-old White woman had been married for
over ten years to her second husband and had a young
daughter from this marriage. Raised in West Michigan, she
married young, had one daughter and two sons from that
first marriage, and divorced when her children were still
in school. Her current husband had one son from a prior
marriage, totaling five children in their blended family.
Yvonne assisted in health decisions in her family, but
viewed this process as interactive with her husband.

Yvonne was described in field notes as being artistic and
dedicated to her family and church, yet reluctant to
respond to questions with reservations noted both verbally
and non-verbally. Yvonne graduated with a Master of Art
degree from a local university and taught at a community
college. Yvonne used her middle name as a pseudonym.
Health behavior overview of participants

These women's narratives demonstrated support for how
the early views of health and family discussions related to
cancer and breast health have influenced the development of
their current View of health related services. Yvonne

stated:

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“Well, my mother always was very conscious about uhm..
food and ah.. making sure that we got ah.. just an
excellent diet, uhm.. fruits, vegetables, uhm.. that
we got enough rest. You know, she-- we were very-—
our schedule was very kind of strict and regulated, so
we got to bed at a certain time, you know, and uhm..
just things like that. And uhm.. kept the house clean
so that things were helping to-— we had a healthy
atmosphere to live in.”

This passage alone indicates three health related topics
(nutrition, cleanliness, and rest) that were the focus of
discussions in Yvonne’s family of origin. When asked if
she knew, growing up, that these activities constituted
“health” she stated:

“No, probably not. That was just the way things were,
you know?”

In addition, when asked how she began to think that health
was the focus of these activities Yvonne stated:
“Probably not until I had my own family and started
thinking about the best way to raise my family. And
then I just kind of followed the same path.”
These passages illustrate the influence of the family of
origin-learned behaviors or beliefs about health on the
views of health within Yvonne’s current family. Kim,
vividly remembered health related admonitions from her
mother stating:
“Oh, my mother uhm.. she made sure we had our
breakfast, lunch and dinner. We always had well-
balanced meals. Uhm... she was very clean and she
made us very clean. And we had a routine where I mean

we knew if we wanted to do weekend activities that our
beds had to be stripped and dust bunnies gone and

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things cleaned, things-- all the things picked up. So
I— I think that’s kind of where I learned some of my
health values. I mean wa- wash your hands before you
do this, wash your hands before you eat, wash your
hands before you cook, wash you fruit before you eat
it. It was all instilled in me growing up. Wash,
clean, clean, wash.”

Kim's family of origin participated in routines that

illustrate the importance of certain health related

behaviors.

However, when asked about a specific health topic (the

meaning of cancer) in the family of origin, both indicated

that intuitively, they knew “it” was bad. Kim stated:
“Ooh, cancer was bad. Uhm... I don’t-- I want to say
that probably growing up, probably I don’t think it--
I don't want to say I don’t think it was called
cancer. Maybe I wasn't aware that it was cancer,
‘cause I don’t-- I can't remember if it was like that
defined back then. But uhm... it was-- I know it was

always something really bad. People were always very,
very sick.”

Kim’s visually stimulating description of cancer
illustrated the “badness” of cancer.
Yvonne echoed a similar response to her parents view of
cancer, stating:
“Hmm. I just thought of cancer as something that was
growing out of control. And I guess my parents didn’t
spend a whole lot of time talking. I mean when I was
growing up, a lot of issues like that were kind of
quiet-- kept quiet.”

Yvonne did not describe the perception of cancer within her

family of origin in the same intensity of “badness” as

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Kim’s family did. However, these quotes illustrate how
families discussed and dispensed knowledge related to
health in an open fashion, modeling learned health
behaviors. At the same time, cancer was feared, unnamed,
and seldom discussed. As will be shown, these divergent
attitudes indicate the great influence of culture in terms
of learned behaviors (within the family of origin) on
current behaviors related to the use of cancer screening
services. Information gained from these interviews also
revealed how role relationships, self-confidence, and
increased knowledge have contributed to changing views of
cancer and the use of breast health services. Ecomaps
created by the participants provided visual confirmation of
the verbal data. The findings are presented in three
sections corresponding to the stated objectives and the
supporting research questions.

Summary of Results

Objective One: To explore the influence of beliefs and
values about health on the decision to participate in
breast cancer screening.
Research Question One: How do women describe their health
needs in relation to their family?

The first research question focused on the influence

of the family in determining the use of health services. It

92

was assumed that beliefs and values acquired through
learned behaviors in the family of origin influence how
women View their personal needs in relation to their
family. Therefore, responses are categorized according to
the family of origin, the current family or comparisons
between the two.
Family of origin health beliefs and values

Valuing health and beliefs about what constitutes
health are learned behaviors. Within families, individual
behavior is influenced by the behavior of others. Children
learn from their parents’ values and belief systems that
are expressed as behaviors. Among the respondents, all
valued health. All described activities within their
families of origin that were directed toward health.
Health values were apparent in the responses to the
interview question, “When you were growing up, how did your
family define health?” This question was posed to help the
researcher understand how women define health in order to
then determine how health related decisions were made
relative to other family members. Responses among
respondents fell into the categories of nutrition, dental
care, and cleanliness. It should be noted that none of the
respondents verbalized an actual “definition" of health,

rather, all provided a description of health related

93

activities learned within their family of origin. Kim and
Yvonne spoke of nutrition and cleanliness as quoted in the
opening remarks of this chapter. Others indicated the high
priority placed on eating a healthy diet. It also is clear
that the messengers were either mothers or at times
grandmothers, health maintenance is a women's role. Coffy,
remembers her mother describing the benefits of eating a
low fat diet, stating:

“- Part of it was because of my grandmother. Now, my-

my grandmother's a great cook, and she does a lot of
the traditional African American soul food, and stuff.

Uhm... But m- mom said that she felt that a lot of it
was just really kind of- Some of it was really
fattening. Uhm... She didn't necessarily like cooking

a lot of those things, or eating them. And then there
were some things, because they would eat it so much,
she was determined, we're not going to.”

In this passage, Coffy's mother recognizes that certain
foods or methods of cooking were “fattening”, and in the
culture of the United States, fattening foods are
unhealthy. This passage also illustrates a cause and
effect relationship between eating and health that was
relayed to Coffy by her mother.

Maya remembered her family having a level of awareness
about healthy eating. Her family practiced the eating
habits in relationship to visits with physicians and
diabetes, requiring diet manipulation to demonstrate that

healthy eating rules were being followed. The timing of

94

the healthy eating discussions occurred before these

appointments:
“And when it was discussed it was that my--they were
going to visit a doctor for management of their
diabetes for my grandmother and my grandfather. So
that always meant that-- What I would remember them
saying is that they had to do special things prior to
their visit. Like, well I can’t eat any cake. I
can’t make any pies. I better not have this. So they
would change their eating habits in hopes that it
would lower their testing results. You know, their
blood sugars or whatever. It was sort of like they
were trying to do things differently just before that

doctor’s visit.”
Maya

This quote illustrates that Maya learned the relationship
between eating and high blood sugar as health related
behaviors and that in her family, all condoned the
strategic methods used to achieve an acceptable blood sugar
level. While this passage does not specifically identify
“health”, it does illustrate a cause and effect
relationship between a behavior and a disease process
understood by family members.
Other respondents received clearer messages about eating as
directly related to health. Sojo remembers her mother
providing an ongoing and consistent message about the steps
necessary to stay healthy, stating:

“And how to stay alive and well. And so, I can only

remember her saying and practicing healthy eating

habits and, you know, staying well before you got

sick."
Sojo

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Sojo clearly learned that healthy eating would result in
wellness. This simple passage too, illustrates the cause
and effect relationship between healthy eating habits and
staying well.
Rose remembered specific foods that her mother identified
as providing the necessary components of a diet leading to
health. While her mother was not formally educated, her
knowledge of nutritious foods was appropriate. Rose
stated:
“Well, my mother made sure that we would eat healthy.
She always stressed, eating vegetables. Eat your
vegetables was one of the main things that she always
talked about, and she always made sure that we would
have our green vegetables. She would say, you know,
you gotta get your green vegetables. You gotta stay
healthy. If you green vegetables you'll stay healthy.

So, you know, we made sure that we ate plenty of
vegetables.”

As stated, Rose learned that eating vegetables would lead
to health, illustrating again, a cause and effect
relationship.

Two of the respondents intimated that the message related
to nutrition and health were supported by both parents,
indicating either an overlap in roles within those families
or minimally, endorsement of the message on the part of the

fathers involved. Amy stated:

96

“I don’t know, I know my Mom and Dad both were there
with me when it happened, and, you know, he’d help her
and maybe my eating habits or something, she would
say, you know, you'd have to eat better and maybe--or
I know, and she'd say “Well you're, you know, more
like your father ‘cause I don’t have that problem but
he does have that problem so you must be more like him
and you just need to eat more good food, vegetables
and things like that".
This statement by Amy was the only response that
illustrated a type of relationship between herself and
another family member. That is, this statement indicates
characteristic Amy inherited from her father but not the
relationship between health needs and other family members.
Amy also revealed the role that her father played in
formulating her view of health.
Of all the respondents, Hayley was the least willing to
share her memories. However, nutrition was identified as an
indicator of health within her family of origin as well.
She stated:
“Yeah, I just think that, you know, is a good start.
You have to be taught how to, you know, how to eat
right ‘n kinda your parents are an example for you,
you know. If they are going to the doctor and taking

care of themselves, then I think that reflects onto
you.”

This statement by Hayley acknowledged the role of the
parents as modelers of appropriate behavior.
Bambi described a family of origin that seemed to be the

most troubled and the messages less clearly defined.

97

However, in retrospect, Bambi remembered nutrition as a

message and wonders now if it was related to health.
“I know we did eat well, we weren't allowed to eat a
lot 0' sugar, we didn’t drink a lot 0' pop, I don’t
know if that’s because we were a family of four and
couldn’t afford it, or if it was a health issue, uhm..
I don’t think I really, really got conscious about it
myself until I was an adult on my “

As in the other messages, the cause and effect relationship

between eating and health is evident. However, the message

is directed more toward what should not be done rather than

what should be done to achieve health.

Among all of the respondents, Cissie described a family of

origin that was the most highly educated and included a

message directly related to the content relationship of

food groups and health. Cissie stated:

“So maybe those are some of those kinds of things.
Eating a balanced diet, kind of one of those things”.

In all of these statements, participants indicated that
they learned about eating healthy foods within their family
of origin and all appeared to be directed toward personal
behavior. That is, none of the women indicated that they
learned to eat healthy in relationship to the needs of
others in their family, but rather, for themselves. Each
learned a cause and effect relationship between eating

nutritiously and health.

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Women also discussed other health topics discussed within
their families of origin. As with Kim and Yvonne in the
opening remarks, dental health, visits to the dentist or
tending to dental care were voiced as descriptors of health
among several of the women.
“We always went to the doctor and uhm.. to the
dentist, you know, every six months, and so it was
pretty good.”
Hayley
This passage illustrated that Hayley learned the importance
of seeking dental health within a specific timeframe. Kim
even remembered incidents of the dental health message in
relationship to caregiving of other children from her
parents who provided foster care services.
“But if the baby happened to fall asleep she had to
make sure that we wiped the gums with a clean cloth to
get the-- something off the gums, so we’d always do
it. We had dental care before we had teeth. I
remember that real explicit.”
Kim
Kim learned a cause and effect relationship between
exposure to formula and dental health.
Maya’s memory of dental health was clearly relayed by her
mother:
“My mother did not believe in not having, what am I
gonna say, perfect teeth. So, we were-- We did
receive cleanings as children. In fact, I never had a
cavity until I got into my late 40’s. So, I meaanh,
yeah. She made sure that we brushed our teeth before

and after, and maybe that’s why—— I mean, she didn’t
tell us we didn't have candy, but we never, that was

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not anything we did as children, purchase candy or
even to follow that. I don’t know what we were doing.
We weren’t eating candy thougtho I do remember dental
being a priority. We brushed our teeth before or when
we got up, and she made sure that we brushed our teeth
after meals. She made sure that we brushed our teeth
before going to bed. That was very important to her
to have good teeth.

Maya

Maya learned the relationship between eating sweets and
dental health in terms of the development of cavities after
exposure to sweets.
Rose also remembers her mother’s concern for her teeth and
the message that eating candy could lead to cavities.
“And so she didn’t want us to eat a lot of sweets.
That was one of the major things. And I think also,
you know, she thought about us having cavities because
she was really concerned about our teeth, you know.
She didn’t want those to go bad. But, it was mainly,
you know, one that was one of the things that she said
no."
Rose learned the relationship between sweets and the
development of cavities as part of dental health.
Women also described health messages related to
environmental concerns. Cleanliness as a health related
activity was recalled by a number of the respondents that
was related to personal hygiene, stating:
“I think just cleanliness, uhm.. you know, making sure
you shower, wash your hair. That is a good thing for
you to learn when you’re younger, and I mean you just

want to be clean."
Hayley

lOO

Hayley learned the importance of cleanliness as an
indicator of health and described how her siblings teased
her if her hair was dirty.
The impression of hand washing hit home with Kim and Cissie
who stated:
“She would just say that, you know, “It’s so easy.
Your hands are such a dirty place ‘cause everything is
dirty. You don’t know who touched anything last and
you need to wash to your hands because you use your
hands and you stick ‘em up in your eyes and you'll get
something.”
Kim
This passage illustrates an example of Kim's mother’s
awareness of the transmission of infection and that Kim
learned the importance of hand washing to avoid the spread
of “bugs”.
Cissie laughed when remembering the hand-washing message
that was directly related, by her mother, to health.
“Well, she was a rabid hand washer, I mean, you know
that it was obsessive/compulsive or anything, but she,
you know, she did- She instilled that in me, to wash
your hands frequently, to stay healthy. What else? I
think I've grown up with a real positive sense of what
health is, even if it's not necessarily verbalized.”
Cissie
Cissie learned the relationship between hand washing and
health, and acknowledged that the behavior was learned
through observation and messages.

Yvonne viewed cleanliness, as an environmental requirement

within the home, stating:

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“And uhm... kept the house clean so that things were
helping to—— we had a healthy atmosphere to live in.”

Yvonne learned the importance of living within a clean
space as a method to achieve health.
Finally, two of the respondents related dressing warmly as
a health message relayed within their family of origin.
“1 don't really remember it necessarily being, you
know, like a~ a big- a really big issue, probably
because of the fact that c-colds were like common.
But it would be the thing, "Okay, dress warm, do this.

Do that."
Coffy

Coffy learned indirectly that dressing in certain ways
could lead to avoidance of an illness.
Among the varied types of health behaviors shared within
Cissie’s family of origin, Cissie stated:
“ And, also dressing warmly. Maybe that's to stay
healthy, too. Dressing warmly for the weather. So
maybe those are some of those kinds of things.”
Cissie
In retrospect, Cissie expressed the learned behavior of the
importance of dressing warmly to avoid illness.
The themes described by the respondents illustrate the
types of messages within the family of origin that helped
to shape their beliefs and value of health. These messages
related to attention to personal hygiene, nutrition, dental

care, and appropriate dress are examples of health beliefs.

None of the messages described the relationship of these

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personal health activities to the general well being of the
family. For example, none of the women described the
importance of preventing the occurrence of a cold, or
cavities because of the expense for the family in treating
the disorder or to prevent the exposure of the rest of the
family to the disorder. Few explanations were given
regarding the rational and reasoning for the behaviors.
Family of origin health memory

Respondents also were asked the question, “What is
your first health related memory?" This question was
directed toward understanding whether women learned to
think about the relationship between health and others
within the family. While respondents described (defined)
health within their homes as staying healthy through eating
properly, cleanliness, dressing properly, and activities
like receiving dental care, most recounted their first
health related memories as unpleasant.

Kim precisely directed healthy behaviors. Kim recalls
her first health memory associated with childhood
immunizations.

“I’m gonna say shots. Uhm... I just-- I think getting

ready for school and making sure that we were—- that

our immunizations were up and going and having that
physical done right before I think probably

kindergarten or preschool. Yeah.”
Kim

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Kim learned that health was related to immunizations and
having a physical examination in relationship to school
attendance.
Maya remembered growing up in a home that encouraged her
participation in extra curricular activities such as
playing the violin and ice-skating. Her first health
related memory was as a result of an accident incurred
during an ice—skating outing. Maya recalled:
“Oh, I guess the memory that I can bring to place was
that I fell on the ice. And I started to bleed and my

brother’s carried me home and I had to go to the
emergency room to get stitches.”

Maya learned that receiving an injury would lead to the
rendering of a health service.

Hayley also remembered her first health memory associated
with an injury. The unpleasantness of the injury was
magnified for Hayley by the fact that she was away from
home and a doctor that she loved and trusted. Hayley
stated:

“Well, it was when I got bit by a dongm uhm... It bit
me in the nose, and my whole side of my nose came off.
And I remember goin’ into surgery and to the doctor,
and I was kickin’and screamin’, and all I can remember
sayin’ is I wanted my Dr. Wilcox that I went to. We
were in Albuquerque, and I went to Dr. Wilcox in

, and uhm.. I—I can just remember kickin’
and fightin' in that room with the nurses and doctors,
and they sewed my face up and I had to wear a mask for
quite a while and just doctoring that. And I remember
wearin' a Band-aid for months over my nose.”

 

104

Hayley learned that an injury lead to an unpleasant health
related experience and she learned that injuries precede
health-seeking behavior.
Sojo remembered that she went to her grandmother’s house
for lunch during the school year. Usually viewed as a
pleasant time with her grandmother, Sojo recalled her first
health memory in relation to one of these noontime
encounters. She stated:
“I went to my grandmother's house every day for lunch
and I was in about the fifth grade and I went to her
house that day and I couldn’t get in, and like I said
I’m always curious, you knowmAnd, I’m looking through
all of those windows and I see her and she’s laid out

on the floor. I bust open the window and I go in
there and, you know, she’s unconscious.”

Sojo vividly learned that an illness could have a negative
outcome for her family.
Rose’s her first health memory was associated with her
sister’s health experiences rather than her own. Rose was
raised in a family in which she felt distant from her
mother because her mother had remarried and moved the
family from Chicago to western Michigan. As a result, Rose
grew close to her sister. When her sister encountered the
health care system, the episode made a distinct impression
on Rose who stated:

“The very first thing I remember is my sister. She had

scoliosis. And they had to do that back surgery on
her, and when I went, you know, we went to visit, my

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mother and I, I passed out. And because I saw this
blood and I never seen, you know, blood like that, and
it was just too much. And I think at that point
that’s when I said, “You know what, I don’t think I
need to be in the hospital or the doctor’s office
anymore, you know, because of that.”

Rose experienced the unpleasantness associated with health
care and chose to avoid experiences similar to her
sister’s.
Yvonne, too, recalls her first health memory associated
with a sibling. She stated:
“I guess the only thing that comes to mind is— is an
injury that my brother hadeell, we were outside
playing the snow and we were knocking icicles off the
roof. And he happened to have <1aughs> a- an icicle

land on his head. And we rushed to the hospital and
uhm... took care of it.”

Yvonne learned a cause and effect relationship an injury
and entry into the health care system.
Three respondents recalled events associated with illness
and uncomfortable feelings related to procedural tasks.
“Oh I know what that is <1aughs>, this is not very
pleasant but I-I had a problem when I was little,
going to the bathroom, I was always constipated and my
first health memory is my Mom giving me an enema,
those old terrible enemas, that’s my first-“
Amy
Amy perceived the enema as an unpleasant health experience.

Bambi also recalled a memory of a health related procedure,

stating:

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“I can remember going to the doctor and having, you

know, the temperature in your butt. Uhm... the big

traumatic uh... I had my tonsils out, I can remember

that, you know, being in the hospital with that little

emesis basin, and-“

Bambi

This passage illustrates the association of medical
paraphernalia with an unpleasant health memory for Bambi.
Cissie recalled having a disease and as a result of this
disease her parents implemented certain strategies.

“I think that the earliest thing about health related

events, I think I must've had measles. And I must've

been under five, probably under four years old, 'cause

I was in a different bedroom than I was later on.

Remember being in that bedroom. Remember being told I

have to stay there. And I remember my parents going

off, not that I was left alone.”
Cissie
Cissie learned that having this type of illness left her
feeling isolated in some way.

These memories illustrate the unpleasantness
experienced by the respondents either through an actual
illness or through injury. Consequently, each respondent
began to learn the relationship between the event and entry
into the health care system. Many of the women remembered
the relationship between the experiences and other family

members and the dependence of family members on each other

for assistance.

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Family of origin adages and sayings

The use of language in terms of sayings and adages was
examined to discern the delivery of health messages within
the family of origin. Participants were asked, “What kinds
of sayings or adages do you remember your parents or
grandparents using to talk about health?” Most of the
respondents found it difficult to cite a saying or adage
used in their families to impart health messages. What
came to mind for most were health related, as in the
example by Kim who stated:

“Consumption sticks out in mind. You're-- some of

you—- when you get the consumption that was gonna be
really bad.”

Kim learned that a particular illness named “consumption”
was to be feared.

Maya remembered fear as an associated feeling when
discussing sayings and adages used in her family.

“Well, I don’t know if it was a fear factor. I mean,
I guess for me, all I can remember is from that
experience and from childhood, it was a fear factor
that was introduce. I needed to do this because if I
didn’t, then something would be bad happened to me. I
mean, I either had to follow directions or I had to be
submissive. I had to be something in order to not
have these bad things happen. So I guess, it was more
of a negative response ” Maya

Maya’s recollection of a saying or adage used to relay

health information demonstrated a subtle cause and effect

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relationship between a particular action and something bad
happening.
Sojo recalled a commonly used saying about “An apple a day
keeps the doctor away” and recalled other references to
sayings but could not recite them during the interview.
“The apple a day, and there was something about the
gout. I don’t I can’t ever remember that one. I work
with people that, you know, deal with health issues
and I always try to remember the saying about the
gout. I don’t know. I can’t remember it.”
Sojo
While Sojo could not remember the particulars of the
message, she learned that sayings or adages could be used
to impart health information.
Coffy, who remembered her mother’s reference to dressing

warmly, shared a comical response:

“Oh, God! Oh, my mother was good for saying, "They
bury 'em cute."

When asked what that meant to her, Coffy stated she did not
know, but that even now she recalls that saying on cold and
wintry days. Therefore, Coffy learned through the use of a
saying the importance of dressing warmly.

Other respondents conveyed vague recollections of health—
related sayings or adages used in their families of origin.
Amy’s memory focused on the value of health when she said:

“You got your health, you got everything <1aughs>.”

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Amy learned the value of health as a priority in this
simple example.
Hayley’s memory focused on an action in response to an

illness that was viewed as health related behavior:

“Boy. Just if uhm... I don’t really remember anything
like as a word, but I just if you were sick, you were
supposed to go to the doctor. You know ”

This passage indicated that Hayley learned about health
seeking behaviors in times of illness.
Cissie's focus referred to her mother's emphasis on hand
washing that imparted a level of awareness about healthy
behaviors.
“She instilled that in me, to wash your hands
frequently, to stay healthy. What else? I think I've

grown up with a real positive sense of what health is,
even if it's not necessarily verbalized.”

Cissie learned through clear messages used by her family of
origin to impart healthy behaviors.
Bambi referenced a saying, unrelated to health, but
acknowledged the lack of communication that occurred in her
family.
“I wanna say “Don't cry over spilt milk”, but that
might not have been about health, but, you know,
you're not s'posed to get upset, remember “Don’t cry

over spilt milk”. <Laughs> I can't think of any, just
that one. We must not have talked much <1aughs>.”

110

Bambi learned through adages or sayings the
inappropriateness of certain behaviors within her family of
origin.
The use of health related adages among the other two
respondents’ families were either not evident, or were non-
existent.

“Oh, my. Well there are a lot of family sayings, but

I’m trying to think of some that are related to
health.”

Yvonne

“There weren't any. There just weren’t any that I can
recall.”
Rose

These passages illustrate that for Yvonne and Rose the use
of sayings or adages were not remembered as significant
within their individual family of origin. Several of the
African American women recalled specific home remedies
rather than sayings and adages.

Kim’s memory focused on home remedies used across the
generations in her family. Kim stated:

“Uhm... my mother always had older- older friends and
they always had their little home remedies and old
wives’ tales. And so I remember a lot of—- I can
remember a lot of that Oh, yeah. If we got a cold,
then we got uhm... we got these hot toddies with the
lemon and the- the lemon and the whisky and the uhm...
I think they put some-- even some onions in it and
made tea. And they brewed it up really strong. And
<1aughs> you could have—— you could have a hot toddy
going on. And uhm... I can remember uhm... I don’t
know what the dandelion wine was for, but there was

111

this- this lady that lived up north in one of our
little houses and uhm... she would make this dandelion
wine and pretty much used uhm... all kind of these
tree type things. Uhm... when you got the mumps she
got the sardines around your neck or this stinky stuff
something around your neck to kind of help the
swelling. Uhm... earaches got a cotton ball with
sweet oil in your ear. <Laughs>. I kind of grew up
with all those kind ofm”

Kim’s family used a variety of methods to ensure health.

Coffy remembered distinctly a home remedy that as an adult

she looked for (“Three Sixes”) but was unable to find.

Coffy stated:
“First of it, was the praying. Uhm... If you had a
cold, the honey and the red onion. Honey, red onion
and was there something else with it? I used to just
think, "Oh! This is so gross." "Three Sixes", oh
God, I remember! We used to have to do- take "Three
Sixes", with quinine.”

Coffy could not recall what “Three Sixes” was, but

remembered the distinct taste. Coffy also recalled the use

of faith and prayer.

Maya remembered the use of home remedies stating:
Well, I guess I have to go back to home remedies. I
mean, they would do the toddy’s. They would do some
of the folklores. Like toddy’s is the honey, the
lemon. Sometimes they would put a little dash of
alcohol to give you this big, you know, kick.
<laughs?”

This passage illustrated a specific internally consumed

remedy. Maya’s family also used other types of home

remedies. Maya recalls:

112

“Oh, yeah. I mean, home remedies even goes back to
massage. We would massage my grandmother’s feet. We
would massage her back. I mean, she taught us early
how to do those kinds of things because it made her
feet feel better. And when I think about it, that was

a very loving relationship. Maybe that’s why we all

were very drawn to my grandmother because we always

touched and did things like that for her.”
This passage also illustrates the use of a complementary
therapy and the value of touch.
Rose was unable to remember specifics, but recalled that
her family used home remedies. Rose stated:

“ But, I remember, even my great aunt, they did not

believe in going to doctors. They had what they

called those I can’t think of it right now. But they
just had their own home remedies.”

The passages presented illustrate the foundation for
health beliefs and behaviors learned within the
respondents’ family of origin and how these women learned
about their health needs in relation to their families.
While not receiving a clear rationale of the need for the
individual to stay healthy within the home, they each
learned strategies to maintain personal health. The next
questions explored how women learned about cancer within

the family of origin understood their personal screening

needs in relation to their family.

113

Family of origin and cancer meaning

The next questions asked the respondents to recall the
meaning of cancer within their family of origin and to
describe their first memory of cancer within their family
of origin. Because the responses to these questions
overlapped, they are presented together.

In the opening remarks Kim described the negative
meaning of cancer within her family of origin. Other
respondents recounted similar experiences. Coffy
remembered her first encounter with cancer in association

with a college friend:

“It [cancer] really didn't have a meaning. I mean, I-
I had heard of it, but I wasn't knowledgeable of
anybody having it. Uhm... First person I can remember
having cancer was uh... my uh... my best friend in

high school, her mother. And we were in college and I
went to go visit her, because it was my spring break.
And I- I went to go visit hermAnd we were gonna' go to
a party, and something had happened, and we were
taking our time getting out the room, and her mom
called. And her mom told she had can- that had been
diagnosed with cancer.”

This passage illustrated a family relationship within the

context of the cancer diagnosis. Coffy remembered how

unpleasant the experience was for her friend.

Three of the respondents shared death as a common memory

associated with cancer; hence the meaning of cancer for

these respondents became death.

114

“Well, it was death, certainly. And my first
experience with cancer would have been my mother’s
mother. So it would be my maternal grandmother. She
died of cancer."

Maya
This passage illustrates Maya’s first memory of cancer in

association to her grandmother’s death.'

Sojo recalled a relative with cancer who died:
“That was just as a matter of fact I had an uncle and
he had some kind of stomach cancer and he was just
dying and he just literally he was the baby brother

and he ended up with the bag, you know.”
Sojo

Sojo recalled the memory of her uncle with cancer and
particulars related to the disease (the “bag”) and the
relationship between cancer and death.
The memory Bambi recalled also demonstrated a family
relationship:
“The only issue when I was small that I remember was
my great-grandma died of cancer and I remember my
mother and my grandmother talking about my grandmother
taking care of Great-grandma Hansen, when she got very
sick and she died 0’ cancer.”
Bambi
While this passage illustrated a family relationship to
cancer, there is no indication that there were other family
members concerned with their personal health needs.

Hayley’s memory of cancer indicates awareness for personal

needs:

115

“Just, you know, that uhm... they could—they could die
from it. They may not be around, and you need to if
you think anything’s wrong, I guess you just you need
to go get it checked out.”
Hayley
Hayley learned about appropriate health seeking behaviors
because of others’ experiences with cancer and death.
Others referenced cancer associated with fear. While not
specifically stated, the meaning of cancer for these women
was fear. This was expressed in the tone of their voice
and non-verbal actions when discussing these questions.
Rose’s eyes grew wide when she recounted:
“The only thing that I can remember that cancer was
something you didn’t want to get.”
While Rose learned that she never wanted to “get” cancer,
there is no indication of an awareness of her personal
health needs in relation to her family.
Amy described her parents’ sense of frustration, which she
interpreted as:
“Just something very bad that they didn’t know why it
happened and that uhm... I do remember them talking
about uhm... all the money spent on research and why
couldn’t they figure something out.”
Amy learned that cancer was “bad”, but did not indicate a

sense of learning anything about her personal health needs

in relation to the family.

116

Yvonne also indicated that in her family, the topic of
cancer was a non-topic of discussion. As a result, her
understanding of the meaning of cancer was limited, but
closer to a description of actual cancer cell activity.
“Hmm. I just thought of cancer as something that was
growing out of control. And I guess my parents didn’t
spend a whole lot of time talking. I mean when I was
growing up, a lot of issues like that were kind of
quiet-- kept quiet.”
Yvonne
Yvonne indicated learning two things in this passage. One,
that cancer was uncontrollable, and two, that cancer was
not an appropriate topic of discussion in her family of
origin.
Cissie’s response evoked the academic manner in which her
family discussed difficult topics. This open and honest,
matter-of-fact pattern of discussion seemed to help Cissie
understand cancer in terms of cause and effect and death
and dying. That is, Cissie began to understand that
participation in certain behaviors could lead to cancer and
result in death. She recounted the practicality of her
mother’s discussions:
“That's very interesting. I don't know when that came
about in terms of the family consciousness. Somebody
must've had- I'm sure some neighbors had cancer. One
thing that I think having a nurse for a mother, but
also growing up at the time that we did, we had an
awakening to these ideas of cancer, or disease, or

even death and dying that was happening, because you
know, like Elizabeth Kubler Ross was coming out and

117

looking at death and dying that hadn't been done

before in this society. And so, we were kind of going

along with those things. My mother's always been

very, very, practical about terminal illness, or big

things like that.”
Cissie learned the relationship between cancer and death,
but did not indicate gaining an understanding of personal
health needs related to the family.
Family of origin cancer sayings and adages

The question about sayings and adages for health used
in the family set the stage for the question, “What kinds
of sayings or adages do you remember your parents or
grandparents using to talk about cancer?” This question
was asked to understand how women learned about their
cancer related personal needs and what specifics they
learned through the use of sayings and adages. The
responses to this question reflected the lack of
understanding of cancer; the associated fear felt because
of this lack of knowledge and the media attention toward
cancer in the 1960’s. John Wayne referred to cancer as
“the Big C”, rather than using the actual word. That
message was remembered by two of the women.

“I think nope, just they didn’t say anything about I

know I have heard the Big C.”

Sojo

This passage indicated that Sojo learned very little about

cancer within her family of origin.

118

Cissie recalled a similar memory:
“Whether it was- If we start- I think when we were
growing up, you're the same age as I am, we started to
see anti-smoking ads, and I remember vividly, John
Wayne doing anti-smoking ads. And I remember that
that was- I understood that he couldn't even say
cancer. He said, "The Big C." And he was talking
about the fact that he had been a smoker, and now he's
got lung cancer. But, I remember he couldn't even say
cancer. The Big C.”
Perhaps because Cissie’s mother talked more openly about
cancer, her understanding that Mr. Wayne could not say the
word “cancer” was significant. She does not indicate an
understanding of personal health needs relative to the
family at the time of this memory.
As shown, the question provoked vivid memories for some,
memories of a child visualizing cancer and the way that
cancer affected the individual. These thoughts begin to
demonstrate the development of fear associated with cancer.
Kim stated:
“For some reason in my mind, I always thought that
cancer was kind of like this sore kind of thingm It
wasn’t something that you could see. But I- I think
that’s kind of my first memories of like what cancer

was. I mean you heard it was just something really
gross like a big ooping sore or something.”

Kim came to think of cancer with a sense of “grossness” but
not with a sense of personal fear.
Though not described as a vivid memory, cancer was

associated with death at an early age by Maya who stated:

119

“Well, when it was referenced, it was always like,
well, you know, mama had cancer until, you know,
ultimately she was gonna die or she did die. Or she
died from cancer. So it was always referenced to
death. There was, you know—- There wasn’t that period
of treatment. There was no period of prevention. I
mean, it was just always associated with the death--
What I want to say, a definite sense you were gonna
die."

This passage by Maya indicates awareness that there was not
a clear message about prevention and personal health needs
related to cancer.
Others also spoke of fear and death associated with cancer,
but acknowledged that cancer was not an appropriate topic
of conversation within their family of origin, and hence
the failure to associate sayings or adages with cancer.
“Cancer was really not a discussion in the family
other than, you know, that’s something, you know, if
you get it’s gonna be tough. You know, you’re gonna
die from it, and that’s pretty much it. There was no
detailed information. There was no we were gonna look

this up and see what the cause is. There was none of
that."

Rose indicated that she learned that cancer was anRose
inappropriate topic of conversation in her family of
origin, and thus she learned little about her personal
health needs.
Bambi’s family experience was similar:
No I-I know the one, I remember when I was home and I
was a teenager, the area, I remember my Dad talking

about people , that they thought that was
uh... there was a lot of people up there that had

 

120

cancer and that that-he thought it was related because

all the factories are up there. But other than, you

know, like family related or illness issues we didn’t

really discuss anything like that.”

Bambi

Bambi acknowledged that she did not learn about her
personal health needs related to the family.
These passages describe what women learned within their
families of origin related to health, healthy behaviors,
and cancer. Most of the learning focused on individual
behavior. Few references were made to the personal needs
of the individual in relationship to the rest of the
family. To understand how respondents adapted some of these
learned behaviors to their current family, they were asked
“What sayings or adages do you use in your current family
related to health?” The responses reflect health messages
learned in their family of origin.
Current family sayings and adages
Kim used media depictions of “health” to illustrate healthy
behaviors to her family. Kim stated:

“Oh, yeah. Uhm... well I use the milk thing all the--

I’ll use the milk thing all the time. And I usually
just say, “I need to see those milk mustaches,” and

they just kind of laugh. And uhm... ‘cause I say,
“You’re strong—- you’re strong big boys. I need to
see that milk mustache.” And then my daughter says,
“I hate milk.” <Laughs>. Yeah, uhm... fruit-- I

always tell ‘em that they— they got to eat fruit. And
vitamin C. I- I push that. I push-- I push vitamins.
Uhm... and a lot of stuff you just say because you

121

hear it. You hear it on TV and I think you just kind
of-— you just pick it up and you just kind of
incorporate it in— in your living. And I think they
do a pretty good job throwing it back at me too.”

Whether consciously or unconsciously, Kim had incorporated

appropriate media messages and used them to reinforce

appropriate health behaviors.

Sojo also based her messages on those promoted through

print media. Sojo stated:
“I don’t think I use an adage. I will say, “Make sure
you’re drinking eight glasses of water a day. Your
body’s comprised of water mostly. You need to have
that in there.” “I don’t like water.” “Well, it
doesn’t matter if you don’t like it, that’s what you
need, you know?” Or smoking or alcohol. I don’t
think I have adages. I don’t have adages. I have
whatever I pulled off the pamphlet that we’re trying
to teach the patients that I deal with.”

Sojo used information from pamphlets to reinforce relevant

health messages.

Amy’s messaging reflected her focus on the provider as the

expert in health matters. Amy stated in her use of health

related adages or sayings:
“No I really don’t, I mean it's basically like it was
in my household, as long as they're okay I don’t, you
know, but as soon as they're-something’s wrong, “We’re
going to the doctor right now, ‘cause we’re gonna get
it checked out”. So I don’t really like-“

Amy’s message was less focused on prevention than those

imparted by the other respondents, and more focused on

reactionary uses of health care.

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Bambi also focused on known information to achieve health
in the messages shared with her family. Bambi stated:
“Well I don’t know so much that I use sayings and
adages, I-I know I-I do talk about, you know, drinking
your milk, and, you know, having healthy bones and
eating your vegetables and, you know, same thing, we
don’t have cookies, you know, we’ve got apples or
oranges, uhm... if we do have snacks, I'm a grandma,
you gotta have something, but we buy the fruit, you
know, the fruit snacks ”
This passage illustrated the use of direct messaging rather
than indirect referencing to impart health information.
Cissie does not use adages or sayings, although she recalls
familiar sayings:
“None that I can think of. You know, that old apple a
day keeps coming back into my head, and maybe that’s
something that, you know, I do believe, not that I
practice what I preach, but I do believe that if you
eat right then you will-- your body can function much
better.”
Cissie
This passage too, illustrated attention to nutrition.
Finally, Yvonne messaged appropriate health behavior
reminiscent of that heard in her family of origin. Yvonne
stated:
“Oh, uhm... I say things like, “You really need your
rest. Your rest is more important that this ten
o’clock TV show.” <Laughs>. You know?”
The responses to questions used to answer Research

Question One, “How do women describe their health needs in

relationship to their family” provide a sense of how women

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describe their health needs in relation to their family.
Within the family of origin, these women learned the
behaviors that their parents believed were health related
(nutrition, rest, cleanliness, and dental health). Some of
these behaviors were transmitted to their current family
(nutrition and rest). Cancer within the family of origin
was not discussed in an open fashion. A belief about
personal responsibility to maintain health was clearly
evident as women described an understanding of causal
relationships between behaviors and health learned in their
families of origin. The women seldom described their
personal health needs in relation to their family. For
example, none of the women stated that they needed to stay
healthy to take care of their family, to maintain
employment or to see their children grow. However, women
did describe beliefs that within the family each member
should participate in certain activities to maintain
health. This idea relates to personal responsibility,
agency, and autonomy.

These responses to Research Question One formed a
background with implications for understanding how women

learned about breast cancer as a part of health.

124

Objective One
Research Question Two: “Where do women learn about their
breast health needs?”

The second research question was designed to explore
where women learn about their breast health needs and to
determine if they learn about these needs within their
families of origin or as adults, from health care
providers. Respondents were asked the question, “What did
your mother or other family member teach you about breast
cancer, in particular, or breast health?"

Breast health

Many of the respondents laughed when answering this
question, recalling the lack of information shared between
mothers and daughters, either related to breast health or
breast cancer. Some remember receiving advice about their
breasts related to a sexual nature, but none recalled their
mothers teaching them about breast health or breast cancer.

Sojo recalled her mother sharing advice about how to
“manage” her body in terms of relationships with boys.

Sojo stated:
“Nothing. Nothing. There wasn’t any discussion about

checking them. You were discussed who not to touch
them.”

This passage illustrates Sojo’s non-recollection of breast

health related information.

125

Cissie found the question humorous, particularly because of
her mother’s Southern Baptist background. While her mother
was a registered nurse, and was able to discuss health-
related topics in an academic sense, she was unable to
discuss the breast, because of its sexual connotation.

“No. Breast health- was there some thought of breast
health in our teens? Did you have some? I don't
think there was any thought of any kind of breast
health in our teens. No, that's not what any
teenager, I ever heard of ever thought about breasts
in terms of health Breast health. No, and no, because
she was also a very uptight Southern Baptist, RNmBut I
did think it was real ironic that she was- There was
this prudishness through- from her, that you know, we
just didn't discuss anything sexual, so breasts
beyond- Breasts were a little too sexual to talk
about, even in terms of health. And I, you know, even
any female health stuff, I don't remember any kind of
message coming from my mother the nurse! Who would
have all the information about that, so, whatever
stuff we got about female health came from school.”
Cissie

Even though her mother was a nurse, female health
information was relegated to the school systems.
Rose, who was reluctant to share much about her childhood
because of unpleasant memories, did acknowledge that she
learned very little from her mother, and that there were
topics that were considered off limits.
“I don’t even think we could even say the word breast
in front of her, you know, without feeling like, you
know there was gonna be trouble behind it. So, you
know, to talk about those things, you know like
personal parts of the body, especially on women, we

could not discuss that.”
Rose

126

This passage illustrated Rose’s clear understanding of
appropriate topics for discussion. In her family of origin
there were few opportunities for health discussion. This
theme continued with other respondents. As stated by
Coffy:

“Nothing <1aughs>, nothing, it was—it-it wasn’t an
issue, cancer in any form or fashionmUh-uh, uhm... I
uh... learned it-I guess I got something about
checking myself from the—basically from the doctor
when I went to uh... it-it's-it just really wasn't a
big issue, you know, it was kinda like “Oh did you
examine your breasts?” okay and then he’d do it, but I
was an adult uhm...”

Coffy

This passage illustrated that as a youth, Coffy learned
nothing from her mother about her breast health needs.
Maya expressed a similar experience:

“Well, when I was younger, we didn’t even talk about

female parts <1aughs> like a breast. There was no...
Maya

II

As described by Maya, Sojo succinctly described the content
of breast health discussions when she stated:

“Nothing.”

Sojo

Amy recalled similarly hearing about breast health as an
adult rather than in her youth, stating:

“I don’t think my Mom did, talked to me about it. I

think when I was in my twenties, I think she mentioned

something about well women of that age don’t normally

get breast cancer and uhm "
Amy

127

The message from Amy’s mother indicated a connection to

breast screening when she stated, “women of that age don’t

normally get breast cancer”.

Yvonne's experience was similar, learning about breast

health as an adult and not from her mother:
“I was nineteen. And uhmm And I remember now, uhmm my
mother didn’t teach me anything about it, but I
remember her being really sad about the fact this was
a friend of hers that- that was dying of breast
cancer. And uhmm but I don’t remember anything like,
you know, conversations related to teaching me about
it. I just uhmm remember her talking about how, you

know, what a sad thing it was.”
Yvonne

Yvonne remembered her mother’s sadness associated with the
diagnosis of cancer for the friend rather than a message
specific to breast health. Bambi recalled a procedure that
her mother experienced, stating:

“Again I can remember my mother having to have a

biopsy, and that’s itm”
Bambi

While Bambi recalled the procedure, the message did not
include any breast health related information shared with
her by her mother.

Kim remembered vividly, her mother imparting wisdom related
to breast health (self-exam) and Kim’s reluctance to follow
her mothers' advice. The reluctance stemmed from the
perception of the self—exam as fondling oneself.

“Hmm. Well she did she always said about checkingm
“Are you doing your-- are you doing your self-exams?”

128

And it would be like, “No, I'm not touching myself.”
And she’d say, “No, you really need-- you really need
to just uhm... you really need to just feel around
there for lumps and bumps and stuffm
Kim
This message relayed an association of the breast with
sexuality. Kim expressed discomfort with examining herself
that persists today.
Hayley, too, recalled her mothers' advice to participate in

a breast self-exam as a form of breast health, stating:

“Uhm Mostly probably how to give yourself uhm like a
self—exammUhm my mom aft-like after I went to the
doctor and, you know, she’d just remind me, “You need
to do that,” ‘n so I can just remember that’s one of
my memories.”

Current family and breast cancer screening

Respondents were asked the question “Tell me what you
know about breast cancer screening” to understand their
current knowledge related to their breast health needs.
Most understood their needs, and some specifically
identified who or how they learned this information. Kim
stated:

“Well, the self exams, because you can feel things,
because they’re yours and you should be feeling and
you should be feeling on ‘em and knowing what feels
normal and what’s-— so really the first screening
really should start with you, because if you can
detect something, no matter how minute you think it
is, and then call up and get a follow through, I think
you are able to catch stuff sooner than if you don’t
pay any attention to it, and things are going on, and
you’re not totally in tune with what’s going on with
your body. So I think it's-— I think it’s very
important that- that you do it. Because even though

129

it’s not nice and you don’t really want to do it, it’s
almost a-— it’s almost a nec-- a necessary thing,
because the one time a year that you go in to see your
doctor, you know, if, you know, they might not even--
they might not even feel it, because they do it all
the time, and they don’t know—— they don’t know the
texture of your breasts, if—- as if you were palpating
it all the time I guess.”
This passage includes a reference to beliefs learned in her
family of origin when Kim stated, “ even though it’s not
nice ” to describe a self-breast examination.
Coffy’s response references her current interaction with
the health care system as a result of her personal
diagnosis of breast cancer stating:
“They told me they’d see me this spring when I come in
for my annual again.’
Coffy
Coffy’s response was specific to her post surgical needs
for breast cancer screening in the immediate future rather
than ongoing screening.
Maya, a nurse, was more specific related to her needs,
stating:
“Well, screening means that you’re going to go and do
your recommended mammography. And that means that you
have reached a certain age and you are following the
standard guidelines.”
This passage illustrates an awareness of the use of

standardized guidelines to direct the needs that are age

based.

130

Sojo describes a similar, yet less specific acknowledgement
of age based need for “it” (mammography), stating:

“I don't know what I know. I try to go and get it
done once a year now since I’ve been 40.”

Rose acknowledges her mother’s influence related to the use
of screening services that are also age-based.

“Well, to me, because my mother is trying to get me
signed up seems like every year-- go and get a
mammogram, go get a mammogram-- and I think she’s
like, well, after 45, or... There was an age she
threw out at me. After 45, I just went and got my
mammogram every year. I said, okay, fine. So now I
tell you, she’s gung ho. If you ever wanna see
someone-- and I’m really, you know, amazed at that,
you know. And I’m really amazed that she even talks
about breast cancer to me. Because We could not talk
about those things."

This passage illustrates a change in the relationship

between Rose and her mother that is welcomed.

Amy describes an aged-based awareness of screening needs

and the activities she participates in to screen

appropriately. Amy stated:
“Well, I know that uhm... I do self-exams, and at the
age of forty I think you go for your mammogram. And
that’s what I know. <Laughs>.”

Hayley was uncomfortable in sharing her knowledge, stating:
“Oh geez, I guess I just uhm.. I’ve, you know, read it
before. I’ve kinda seen a chart ‘n, oh, we get a
pamphlet in the mail from our uhm... insurance
company—‘

Whether the discomfort was related to the topic or lack of

knowledge about screening is unclear, but Hayley did

131

acknowledge how and where she learned about cancer
screening.

Cissie described a disconnect between her knowledge and
actual practice stating:

“Well, I mean I know about self exam, doing self exam.
And of course-- and I’m a good medical consumer and I
rarely do self-exam, but I do it. You know, I pay
attention to things and, you know, every so often, but
I’m just not a real regular person, so I have to say,
you know, yeah, I don’t do regular self-exams. But
every so often I do regular self ex-- no every so
often I do self-exams. So, I know thathut I poke
around there and look for lumps and all that kind of
thing. And I get regular mammograms. Now that I have
insurance I get regular mammograms.”

Cissie’s honest account of her actual practice versus what
should be done may be indicative of other women.

Yvonne stated accurate knowledge and the influence of this

knowledge on her daughters’ behavior. Yvonne stated:

“Uhm... I just know that personally I need to have a
mammogram, uhm... and I usually do that once a year.
And uhm... breast self-checks once a month. Uhm... my

daughter had a lump and uhm.. we talked extensively
about, you know, how she discovered it and all of
that. And uhm... she did have it removed and it was
not cancerous. So uhm... so we just talk about how
important it is to, you know, to take care of yourself
as far as having screenings.”

This passage illustrates the belief of personal

responsibility and breast cancer screening.

132

These accounts of health behaviors and memories,
cancer and cancer memories set the stage for exploring the
second research objective.

In response to Research Question Two, these memories
illustrate that few of the women learned anything about
breast health from their mothers. As indicated by some,
breast health was thought of in terms of sexuality rather
than in relationship to cancer. By not learning about
their breast health needs in their family of origin, they
became dependent upon breast health knowledge acquired as
adults. A theme related to personal responsibility is
evoked from the responses in terms of health and breast
cancer screening. Beliefs and values learned within the
family of origin have been transformed within the current
family to impart the same messages to the family members.
As part of that learned behavior, personal responsibility

for health and age appropriate screening is apparent.

Objective Two: To explore the influence of life course
transitions/events on participation in breast cancer
screening.

Research Question Three: “What are the effects of life

course transitions and events experienced by women on their

participation in breast cancer screening?”

133

This question was explored by first examining the
responses related to the life course experiences of the
respondents and then exploring responses to questions about
breast cancer screening participation.

Life Course

Many of the memories described by the respondents
follow a life course perspective. That is, most families
only enter the health care system during times of illness
or injury and during well-child visits. As families make
the transition to having children access to health care
focuses on care for the children. Within their families of
origin, several of the respondents recalled home visits
from doctors and their mothers visiting doctors for their
own personal care. While during times of stress mothers
may seek health care for their children and not themselves
(Campbell, 2000), the respondents did not voice an
awareness that their mothers were sacrificing in this way.
Other memories described events such as death and divorce
or experiences related to moving out of the family home.
The following section will be presented in relationship to
historical influences followed by specific events.

Life course and historical influences
From a life course perspective, historical time and

the influence of political beliefs influence the experience

134

of individuals and their families (Price, et al., 2000).
For African Americans, health care_has been plagued with
access issues and mistrust. This is illustrated by the
African American respondents to the question “What kinds of
decisions do you remember related to health care and who
was responsible for these decisions?” Some of the answers
show a belief that access to health care was not an issue
and a lack of awareness that racism may have factored into
the care they received from the health care system. In
referring to visits to the doctor, Kim stated:
“I think it was very important uhm... in our family.
I can remember several visits to the doctor’s office
for well checks, and any time, sniffles, whatever, we-
we got a lot of health care growing up.”
This passage illustrates Kim’s awareness that while growing
up her family made decisions to seek health care for a
variety of reasons.
Kim also remembers her mother’s attention to her own
personal health.
“And I think uhm... my mother was very good about
going in and having all her screenings and being
checked and having all her-- didn’t like ‘em, but
always made sure that, you know, had a calendar and

knew when it was time to go in and have all of this
stuff done.”

These memories illustrate that while the historical times

of the 1960’s and 1970’s were difficult for African

135

Americans in terms of access to health care, Kim believed
that her mother was able to obtain regular examinations.
In the same historical context, Coffy remembered growing up
in an African American neighborhood in Chicago where her
family had access to a wide range of health care providers.
As a child, she was unaware that her friends and others in
the neighborhood may not be experiencing the same access to
providers that her family experienced.
“I don't know. It wasn't- It really wasn't uhm...
necessarily a- a big issue. We— we had, when I think
back on it, I guess, and when I think back on it now,
I guess we were more privileged than I thought we
were. Or whatever, but, we had uhm... had a family

doctor. We had a family pediatrician. Uhm... My
mother had uhm... her OB/Gyn, actually was my OB/Gyn.

Uhm... Had delivered me, you know. And she went to
him, you know, annually. My grandmother went to him.
Uhm... The pediatrician, I remember, we would go to
him all the time. You know, so, if we had a cold, or

whatever. And so, it was like a family person- And we
actually had like a family dentist, too, that we would
go see. So, you know, I- And I think I took it
granted, probably thought every- all the other kids
were doing the same thing.”
Coffy
This passage illustrated the wide range of providers to
which Coffy had access and lack of awareness of the racism
indicative of the times. She also indicated that she had

no awareness of a difference in her experience from that of

her neighbors.

136

Maya also recalled access to providers for all family
members. Maya’s mother worked for several of the providers.
This afforded extended family and friends access that was
not available to all members of the community.
“Anyway, we did have a physician or doctor where that-
- I remember this so plain because I was at my dad’s
house, my mom and dad divorced, and I guess I must
have been about maybe 12, 11, and I was very ill and I
was laying on the couch and doctor’s were still making

home visits then. And the doctor came to the house ”
Maya

This passage illustrated that the event of divorce did not
influence access to health services, even when Maya was at
her father’s home. Also, her mother's employment benefited
the family through access to health care services.
Sojo’s mother also worked for health care providers and
lawyers who afforded her access to resources and a level of
knowledge regarded by others in the family as expert. In
reference to her mother’s health and work Sojo stated:
“mMeant sickness and for me especially I would say my
mother not being able to get to work on time defined
health in my household because my mother was the
person who worked with the doctors and the lawyers and
she would be the person you’d contact to say
Jessie Bob is sick.”
When asked to expand on how her mother’s employment
influenced access to physicians, Sojo said:
“Because she went back after she actually did retire.
She was involved in community service and getting
information out to people. So, in the end of her

life, the oldest daughter, yes that did occur. But in
the meantime, I think due to the age they grew up in,

137

certainly my mother had access to doctors back in from
my birth was in the ‘505. So she had access to
doctors.”
This passage illustrated awareness on the part of Sojo that
during the 1950’s her mother’s position provided the family
with access to health care services. In addition, her
mother had access, through times of transition from work to
retirement and the event of death, to health care services
because of her work experience.
Sojo went on to describe the racial identity of the
providers, saying:
“At home visits, you know, so they would do that and
they were not African-American doctors. I can’t
recall the African-American doctors that were in the
community that she was dealing with. She was dealing
with White doctors that would come to, you know, our
family’s homes based on what she would say to him and
he would come.”
This passage illustrated Sojo’s family did not experience
racism in terms of access to home health care even during
historical times preceding the Civil Rights Movement. It
is not clear if the experience would have been the same if
the family required hospitalization or expensive treatment.
Two of the respondent’s referenced racism or a sense that
racism may influence access or the decision to participate

in health related services. Maya’s memories were

tassociated with the feeling of control on the part of

138

providers and outcomes for failure to follow direction.
The “they” in this passage refers to doctors in general.
Maya stated, in reference to her mother:

“But she had a strong belief that we had to do what
the doctors told us to do, otherwise, there would be
bad things that happened to us. That was always
engrained that they have control of our lives, and we
needed to be submissive when we came into that
environment.”

The historical times Maya refers to are the 1950’s and the
1960’s. Maya went on to share an overall sense of mistrust
that was associated with interactions with providers. She
stated:

“Yeah. The reference that was made to a person
becoming sick is that their-- Okay, if they had a
surgery, they would say, “Well, you know, they opened
him up.” And, you know, when they open you up, that’s
when it spreads. So, that was frequently referred to.
The other thing was, I don’t know what's in the food,
but it’s killing all of us. And they referred to
different, I guess, genocide or plots, society plots.
<1aughs>”.

When asked if Maya or her family had experienced anything
similar to this description, she shared her View of the
importance of perception regardless of personal experience:

“MI never heard my family say that they witnessed any
bad medicine or knew of personal experiences. I think
they all had heard or believed experiences occurred.
For a Tuskegee incident, for example, that really
didn’t get out until the ‘70’s. And that’s when it
actually came into print. And so, I don't know how
many people-- There was a perception-— And I think
that's one thing that you talk about. You can’t take
a person’s perception away. And often times, there's a
perception about people that we enter with that you

139

don’t even have to say a wordeven when my grandmother
said, and she would say, do you know they can kill
you, was her way of saying that, I know they’ll kill
you or I seen them kill people or whatever, without
speaking about it, to know that it has occurred. But
just informed me of a potential when you didn’t do,
and they related to, if it wasn't done, if you didn’t
respond to what was asked of you, you could be the
recipient of something that would be a negative
outcome.”

Maya came to understand that historical events happening to

other African Americans as a result of racism could also

happen to her if she responded inappropriately to what you

were
Maya
that

this

Maya’

part

Sojo’

“supposed to do”.

went on to describe a form of racial socialization
related to access or interactions with providers. In
passage, “they” refers to providers. Maya stated:
“For my parents, I guess. But, you know, they knew
still-- And they were imparting it to me that he still
had the responsibility for your lifem Didn’t matter
what his color was. That position had control. And
that’s what they were trying to-- It was the control.
Cause I have no control of-- And they didn’t, what a
physician could dom”

5 parents imparted the perception of control on the

of providers indicative of the historical times.

5 reference to racism was less detailed, but

demonstrated a level of awareness that her family’s access

to health care was unique.

“Yes, because I, you know, I don’t know. I don’t know
how the access to medicine was back in the day but I
think sometime depending on your color maybe you
didn’t get in the door.”

140

Sojo
Sojo understood that the historical times influenced access
to health care for African Americans.

The White respondents shared different, more carefree
memories of accessing health care services, with two
referencing memories of home visits by their doctors.
During these historical times, it was common for doctors to
make house calls.

“Well my Mom is just like I am, she was a nervous

person about everything, if you had one little thing

you were, you know, we had to go have it checked out,
very overprotective about my health but we always went
to the doctor, we always had our checkups he made
house calls, he, you know, and he knew our family
history and all of our medical uhm... Problems and

just uhm... My Mom was really into that.”
Amy

Amy learned to access health care services for a variety of
problems and grew to know her provider well.
Hayley too, recalls home visits from her family physician,
stating.

“He made house calls. He would come in the house and

take care of us if we were sick.”

Hayley

Across the life span, each participant experienced access
to health care, with some of the African American women
having access as a direct result of their mother’s work and

others hinting at racism, indicative of the times. Divorce

as an event, was expressed by a number of the participants.

141

Life course and divorce

Six women experienced divorce as a life course event.
Several of the women came from divorced families of origin
and also experienced divorce in their adult lives. Coffy
was one of those women who described her life as a child of
divorce in this way:

“as a child in elementary school, we lived in a two-
flat apartment buildingm half-way through eighth
grade, we moved into a house. And my parents had
divorced when I was about 10 or 11, and uhm... and so,
it's like- Yeah, we had- we had a roof over our heads,
you know, parents worked, so there were some things we
had, but we didn't have a car. You know, we— there
were some things we didn't have, but it was expected
that you know, we went to the doctor. We went to the
dentist. You know, so those things, I just- I took
for granted.”

Coffy

This passage illustrated that even in divorce, the family
sought out health care services.

Along with her own divorce, as an adult Coffy experienced
the event of the deaths of her three children due to a
rare, genetic disorder. Coffy described these life course
events:

“My- my faith has sustained me through life, but it's
also ve- very active. Uhm... It- it's sustained me
through uhm... oh God, traumas and- and uhm...
Probably something else you didn't know either, I
uhm... After undergrad, I— I got married a year later,
and in my- during my marriage we had three children.
And each of my children were born uhm... Premature,
uhm... They were born with some very rare, unnamed
syndrome. And they each lived to be well- They each
lived to be at least a year old, uhm... One son lived

142

to be three years old. And they died as a result of
this syndrome that proved to be uh... Fatal. And
which is one of the reasons I'm divorced, because of

just having to deal with that.”
Coffy

During the life course events of divorce and death, Coffy

used faith to make sense of what she was experiencing.

Rose shared memories that may be more indicative of African

Americans during the 1950’s and 1960’s, and the experience

of stressed mothers overall, who seek health care for their

children and not themselves (Campbell, 2000). Rose stated:
“My mother, I would say was the biggest person, and
she still is the biggest person on health and taking
care of yourself. And although, you know, she
couldn’t afford it she still made sure that, you know,
we were, you know, we seen the doctor regardless of
what it may have been ”

Rose indicated awareness that her mother could not afford

personal health care but not an awareness of lack of access

because of their racial identity.

Rose went on to say:
“But, you know, I don’t even recall her going to the
doctor. You know, and I’m sure she had to go to the
doctorm”

It should be remembered that Rose’s mother experienced the

event of divorce and transition to a remarried family that

may have influenced her mother’s decision to access health

care.

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Maya described her first marriage as a troublesome time
that ended in divorce and remarriage, stating:

“Yeah. I guess I would have to say, although I told
you about my leadership and whatever, I had a very
horrible first marriage, and this was the father of my
children. And I remained married for almost 20 years,
18, 19. And just getting out of that and surviving
that whole, what do I want to say, turmoil. It was
phenomenal to have survived in that relationship and
be the person who I am.”

Sojo remembered a different experience with the separation
of her parents and their ability to remain cordial and
supportive of Sojo throughout her childhood. Sojo stated:

“Together. My dad came to our home every day. My
mother left a lunch for him but they didn’t live in
the same household from the time that I was 13 until;
well I left for school at the age of when I graduated
high school. So, he came there every day and he was a
part of our lives but they never divorced.”

Sojo

Sojo went on in adulthood to choose common law marriage
rather than a formal marriage. This partnership functioned
as any marriage in terms of roles and responsibilities for
both even after the relationship dissolved. In describing
her common-law marriage, Sojo stated:
“That lasted up until I would say that Kelly [ph?] was
about —— maybe eight years of her life. We were just
like I guess we grew up that we didn’t need
marriage We had each other. We had things. We had I

had some college background. My partner had a college
backgroundm”

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This passage illustrated that for Sojo, the dissolution of
her common-law marriage was similar to divorce experienced
by others.

Amy’s parents remain married, but she described her own
first marriage as a response to the arrival of siblings
within her family of origin, a transition experienced
traumatically by Amy:

“Well I know exactly what-what happened, I was an only
child for ten years and my parents, you know, had two
other children, my—my sister was born when I was ten
and then another s-uh... sister when I was thirteen,
and they were raising kind of an-a two separate
families and they're great parents and they're
wonderful parents and they gave me everything, love,
uhm... anything I would’ve wanted financially, they
would’ve sent me to college, but I kind of got hooked
up with a guy, uh... I did get hooked up with a guy,
because I feel-I felt like I was, you know, needing

uhm... attention from someone, because they were busy
with their little family, mSo I met this guy and ended
up getting pregnant and uhm... I did graduate from

high school but then at that time we got married and
then-and that’s kinda what happened, and then I never-
and then went through a divorce, we were married for
eight years and I didn’t go back to school, I was busy
re-raising our son ”

Twice divorced, Cissie recalled the life course events
associated with motherhood and step—motherhood, and the
decision—makers related to health decisions.

“And then I divorced her—- we got divorced when she
was-— when Jordan was two, and I got remarried when
she was four. And it’s-- having two step kids and a
daughter, there’s such a strange dynamic of who’s
involved. But generally I would say that the mother
of my stepchildren was more involved in making the

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health decisions for them. I was the one in charge of

making the health decisions for my daughter.”

Cissie
Cissie intimates by describing the “strange dynamic” that
the transition from a divorced to a remarried family was
difficult and required the making of compound decisions.

These responses illustrate that some of the women have
experienced the life course event of divorce either through
personal experience or from their parents. They each have
experienced transitions from being single, to being
married, or remarried, and from having no children to
having children. In some cases, the women discussed the
blending of families in the event of remarriage.

Historical influences from a life course perspective
were most evident among the African American women who
described the perception or experience of racism during
their childhood years. Whether these experiences influence
their participation in breast cancer screening was
mentioned only by two of the participants.

Participation in breast cancer screening and life course

Having access to health insurance through one’s own
work influences a woman’s ability to participate in breast
cancer screening. Divorce is one life course event that

affects access to insurance for many women. Sojo was the

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first to mention the relationship of insurance to her
ability to have a mammogram. Sojo stated:
“But then they told me my insurance said, “No."
Unless there’s a risk of it in your family. And they
had me do this little thing, and there wasn’t anything
to prove that then. So, they wouldn’t pay for it, and
I couldn’t afford to have it done. And I don’t know
of any programs back then that was trying to do that.”
Sojo had health insurance but the health insurance did not
cover mammography for a woman her age. Single parent
responsibilities and cost prevented Sojo from paying for
the service herself.
Cissie recounted her experience related to lack of access
to breast cancer screening during her second marriage. She
and her husband worked in a private business and therefore
she did not have health insurance. Cissie stated:
“I used to get so mad, I couldn’t afford to pay for a
mammogram and here I am, at risk because my mother had
breast cancer, and I can’t even get it the cost of
paying for my husband's daughter’s asthma affected our
marriagemI thank God everyday that I now have health
insurance through my job and now I can get a mammogram
every year.”
This passage also illustrated the decision to choose health
care for children over personal health care.
In answering Research Question Three, “What are the
effects of life course transitions and events experienced

by women and their participation in breast cancer

screening” it is clear that all participants experienced

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events and transitions in their childhood and as adults.

It was less clear that these events and transitions
affected the respondents’ participation in breast cancer
screening except in the cases of Sojo and Cissie. In these
two cases, the lack of insurance played a part in their
inability to participate. Thematically, the respondents
mentioned accesses to health care and/or health insurance
throughout the life course, but only those two spoke of
transitions and events that affected their participation in
breast cancer screening.

Objective Two

Research Question Four: ”What family related factors do
women consider when making the decision to participate (or
not) in breast cancer screening?”

To answer this question, the respondents were asked,
“Have you scheduled your mammogram” and “In the decision to
participate (or not) in breast cancer screening, tell me
the factors you considered.” Because these questions are
closely related, they are presented together.

Without exception, all respondents had or were
scheduled to have a mammogram. For some, the responses to

the question were brief.

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For Kim, the factors considered were technical, much like

the way her mother responded to health in her family of

origin.
“Uhm... I went in for my physical. She did my thing.
She told me I needed a base-- she’d prefer I go in and
have a baseline. And I just said, “Okay.””

Kim
Kim demonstrated an understanding of the need for a
baseline mammogram as part of a normal physical but did not
mention family related factors in her decision.
Coffy had a different rational for participating because of
a recent diagnosis of breast cancer. The factors she
considered were complicated by mixed messages related to
the treatment course and her decision to have only a
lumpectomy rather than additional therapies. It should be
noted that Coffy was diagnosed (in situ) her conservative
decision was appropriate for this type of early stage
cancer.

“Yeah. That’s all-that was another reason too, it's
like “Okay you're telling me I don’t have to come back
in until next year for my annual [mammogram], but yet
here’s this oncologist “Oh no you’ve gotta come in so
I can pump you full of””, that’s like “you’ve gotta be
crazy”, if—if he's the one telling me, and this is the
one I'm seeing and even my family practitioner here,
she was just like “Oh I got your reports” ‘cause I-I
asked her about it, she said “Well I-I got your
reports, I’ll see you in-in the summer”. 8-50 I just
felt like well, I think you all know me a little bit
better than this person that just looked at this chart
and made it seem like “Ooh, another guinea pig”, I
just thought “No, I'm not having the treatment” andm”
Coffy

149

Coffy described her confusion about the appropriate timing
of her mammogram and ultimate decision to have a yearly
examination. Coffy does not mention other family related
factors in her decision to participate.
Maya’s decision to have a mammogram was based on time and
access related reasons:
“I was due, and that it was a convenient location, and
that although it wasn’t in a breast center, I felt

that it was time and I was comfortable with that
decision just to have it done. It was time, som”

The results of the mammogram were positive for an
abnormality. Maya was faced with the possibility of breast
cancer. She stated:
“Well, I must tell you, I had my mammogram last month-
- no I didn’t. I had my mammogram last September and
that showed a lump. So I’m having a needle biopsy on
the 19th of February that I didn’t tell you about.”
Maya described decisions to participate in breast cancer
screening that were made based on her perception of need
rather than family related factors.
Sojo considered her health and environmental factors from
her past work experience in the decision to have a
mammogram. She stated:
“Well, you know, one thing is just because ever since
they told me I was a diabetic back in ’95, I just
thought, “You better me more conscious of what’s going
on with you.” WI worked in a factory before. I don’t
know what that stuff did to me. I was around a lot of

toulene [ph?], I think you call it. Heavy duty
chemicals and paints and different things. So, I

150

don’t know. I was a smoker in the past. And I don’t

know. Like I said, prevention. I want to be on top

of it.”
Sojo’s belief in prevention played a major role in her
decision to participate in screening, without mention of
family related factors.
Rose provided a simple response that may be related to her
experience as a child in feeling disconnected from her
family. Rose stated:

“No, I’ve just put it off. I just put it off. And I

can’t give any reason other than, you know, I’m always

putting other things before me, pretty much.”
The “other things” Rose referred to are the needs of her
children, who have been described as having health care
needs of their own. Rose was the only African American
woman to specifically mention the needs of others in
reference to her decision to participate in breast cancer
screening.

The White women also shared the factors they
considered in the decision to participate in screening
services, many with a focus on their personal need, either
physical or emotional. Additionally, some expressed
recognition of a fatalistic viewpoint expressed by some of

their friends who have not participated and recognition of

the benefit of early detection. Amy stated:

151

“I need to do this because if I’m-- it’s gonna give me
peace of mind when they tell me I’m okay. And if I’m
not okay, I need to know so I can fix it early and get
it caught, get a jump on itm Uhm... but basically to
do it, you know, I know some people think if they
don’t do it, you know, that, “I’ll never have to worry
about it,” ...... But then I think, you know, if they do,
then good, because that’s a good thing. Because then
we’ll get it fixed. And I’ll have a better chance
than if I didn’t do anything.”

Amy described the value of having a mammogram in
discovering breast cancer at an early stage but did not
mention family factors in her decision to participate.
Although vague, Hayley intimated the idea of early
detection when she stated:

“Oh, I—I just wanta make sure that uhm... they don’t
see anything and just go in and—“

Hayley did not reference specific family factors in this
reference to early detection.

Bambi approached the response from a philosophical stance
that probably comes from her childhood experiences with the
meaning of cancer.

“I think about my quality of life, and what I want
from life, and if I get my screening and I was to
have, you know, a-a tumor and we had to do a biopsy I
would not wanna do it but I would do it, because I
wanna know, and can it be removed and I would take the
steps to take care of it, because I wanna be here when
I'm sixty, I wanna be here when I'm seventy, I wanna
see my kids have kids and I wanna see my grandkids
grow up, and I wanna be there for my grandkids, you
know, I want them to, you know, wanna come see me and
I don’t wanna just, you know, “Oh gee I have cancer,
I'm gonna die”, I don’t wanna die, you know, I wanna-I

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wanna live. So that’s why I do it, and I wanna live
well, I don’t wanna live bad <1aughs>.”
Bambi

Bambi’s response also indicated a consideration for family
related factors in her decision to participate and the
roles that she played within the family. This was
expressed as her desire to see her grandchildren grow up.
She also expressed a desire to have a certain quality of
life with aging.
Describing the factors she considered in her decision-
making, Cissie’s response was indicative of her academic
upbringing.
“Well, I definitely, you know want to make sure about
uh... being in control of the variables I can be in
control of. So uh... especially since mammograms are
fairly —- they’re fairly easy test to get and I hear
all this stuff about, well, they're not that
effective, blah, blah, blah, but you know, until-
until the majority or you know opinion moves to say
that, okay, they’re not worth that much. I just hear
too many people say that their- their cancer was found

by a mammogram, so that’s effective enough for me. So
I'm going to continue to have regular mammograms.”

Cissie’s response illustrated an awareness of the value of
early detection without reference to family related
factors.
Yvonne’s response was simple, but indicative of the power
of access to providers and insurance.

“<Laughs>. Well I pretty much do it because my

physician says I should do it. Although I just did
read something about the fact that it’s probably not

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necessary to have it yearly. But as long as my health
insurance pays for it, I don’t really see a reason not
to.”

Yvonne’s explanation for participation in direct
relationship to having insurance is clear and to the
recommendation of her provider. Family related factors are
not mentioned.

In response to Research Question Four, only two
respondents directly mentioned other family members as
factors considered in their decision to participate in
breast cancer screening. Others mentioned that they were
“due” for their yearly mammogram that alludes to a life
course transition related to aging and considerations
relative to health.

Considering the family ecosystem, several mentioned
having health insurance as a factor associated with their
decision to participate. Others discussed their provider
as influential in their decision-making. This relationship
represents a social/cultural environmental interaction.
Having access to mammography units represents the human
built/technological environment that enhanced access to
care for these respondents. Thematically, access to
appropriate health care services continues as a factor
associated with breast cancer screening. Over the life

course and with increased technology, access to health care

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expanded from having a provider to also having the
insurance to pay for appropriate screening.

The last section of this chapter addresses Objective
Three and the research questions used in responding to the

objective.

Objective Three: To explore individual attributes of women
aged forty to fifty—five, which reflect culturally specific
attributes.

Research Question Five: “How do women perceive their family
relationship, life course transitions, and events as
influential in their decisions to participate in breast
cancer screening?”

This question explored the influence of culturally
specific attributes on general health care decisions and
screening services. It should be noted that throughout the
responses to the other research questions, participants
have revealed cultural relationships within their family of
origin and their current family. These include the
behaviors learned through direct communication with their
parents or through observed behaviors that they adapted and
use within their current families. Their value of health
and beliefs to obtain health all represent cultural

behaviors. Relationships with their mothers and the

155

information their mothers shared with them represent
cultural belief systems. This section explores additional
comments that focus on perceptions of family relationships
and the life course on decision-making.
The questions were constructed to discern how the
information learned in the family of origin translated into
current family experiences and whether women had a sense of
their own health needs in relation to their family.
Current family health values and beliefs
The purpose of asking the question “How does your
current family define health” was to determine if the women
used behaviors learned from their family of origin with
their current family. It also was intended to determine if
women included a sense of personal need in relation to the
family.
Kim described her definition of health as discussions that
are similar to her experiences in her family of origin:
“Oh, hmm. I think we talk about it quite a bitho I
kind of—— it’s pretty open discussion uhm... at our
house about health and health in general. And I don’t
know if it’s because I work in the health care field
and just kind of knew these things. But I’m amazed at
some of the things that comes out of some of my kids’
mouths. That they say-- that are health—related, that
are-- that are health-related. And it’s uhm... the
remarks kind of fly back and forth and they’ll get on
their dad about his salt and his blood pressure. And
stroking out’s another thing that's used quite

commonly in our house.”
Kim

156

Different from the experience in her family of origin,
Kim’s children have learned health-related facts outside
the home that they bring back and share with their family.
These comments demonstrate a sense of awareness of the
relationship of another’s health to the family.
The definition used by Coffy to define health was
practical:
“Again probably the-the fact of being able to get a-
get around and-and uhm... uh... you know, it might not
be necessarily disease-free but uhm... trying to eat
the right things, being able to n-not having I guess
some chronic disease or anything, being able to
basically get-get around and do things, and-“
As in her family of origin, Coffy defined health as it
related to eating properly and avoidance of disease.
Maya defined health holistically:
“Well, I define health as being in your optimal state
of well—being, mental, physical and spiritual.”
As in her family of origin, Maya’s definition focused on
personal needs but not in relation to the family.
Sojo describes her definition of health in relationship to
prevention and recognition of the need to seek information.
She also identifies barriers to obtaining health for

African Americans:

“I just see that we have a lot of ways of being that
are preventing us from being healthymIt's also that

157

prevention is a key to being healthier But I guess we
didn’t know how serious health could be, or how we
should be attending to our health I want to prevent a
thing from happening now, as an adult I can see that
there’s more information from the medical side that
can show you ways to prevent things from happening.
And also dealing with the denial. And especially
being African-American, I don’t know all the reasons
why, if it’s access to care, if it's what we’re
concentrating on to get ahead in our lives ”

Sojo

Sojo goes on to describe the active role that African
Americans must take to achieve health:

“ But we are not bringing the issue to the table.
We’re not attending with the issue once we’ve come to
the table and realized how dysfunctional we are about
it in our community. I can’t see my daughter’s
generation being in that situatioane don’t have to
be So, I’m just totally in that kind of a mode.
Information and what to do with it and let’s make the
outcome a success. So, that’s how I look at health
now.”

Sojo

Sojo described health in terms of personal responsibility,

and she identified the relationship with her community of

African Americans as important in terms of health.

Rose described a prevention related definition of health

learned her mother. This was learned when Rose was an

adult rather than as a child.
“I think I’ve become my mother now with my kids. It’s
like, you know, the least little thing, almost. You
know, you need to go get that checked out, especially
if they’re, you know, constantly complaining about it.
mBut now that I’ve got at least health insurance, you
know, I’m more apt to say, you know what, lets go and

look into this and see what’s going on, you know.
And I’m always, you know, thinking, you know it’s

158

better to catch it while it’s early rather than wait
until it’s too late ”
Rose
While Rose’s mother infrequently discussed health, her
mother currently spends a great deal of time discussing
health, and Rose adapted this pattern with her children.
This passage illustrated the relationship between
prevention and health as important factors for each member
of the family.
When Amy described her current family definition of health
she did so in relationship to an awareness of her own
mortality:
“Well I think whenever your body goes through changes,
like when I went through my change of life I decided
that that something--not that it wasn’t good, but
that-when there's a change like that uhmmthat’s when
some things can start happening in your body. So that
educated me to uhmmAnd that’s when I realized that you
don’t just get an okay bill 0’ health one year and it
sticks for the next year, that’s when it started
clicking with me that, you know, things can go wrong,
you have to continually uhmmbe on top of things,
because if you're not it could be something that could
come up”.
Am)!
Amy’s current definition of health challenged the
definition of health she learned as a child; “If you have
your health, you have everything.”

Hayley’s definition of health was as vague as that earned

in her childhood:

159

“It means keepin’ your body in shape and just stayin’
alive.”
Hayley
When pressed for further explanation, Hayley recounted
messages learned as a child:
“Tryin’ to just eat right and, you know, try to eat
right, eat some healthy things and uhm... I don’t
know.”
The question was difficult for Hayley to answer, and the
response lacked an awareness of the relationship between
personal health needs and the family.
Bambi described the definition of health used in her
current family as one that focused on specific facts
related to nutrition and exercise:
“Well I guess <1aughs> I would have to say I'm lo—and
I-and I wouldn’t be able to even tell you what the
good numbers are, but, you know, you gotta have low
cholesterol and a healthy blood pressure and uhm...
not obesely overweight, uhm... that you exercise,
that’s what I would call health.”
Bambi
This passage indicated a difference in the health
definition she learned as a child, where health discussions
were vague and implied rather than clearly identified.
Instead, Bambi focused on behaviors that are personal
needs, but not in relation to the family. Bambi goes on to
say:
“I—I am pretty-my kids were raised because I was more

health conscious, my kids were raised that, you know,
you have to drink your milk, you gotta have some

160

vegetables and the kids know why, because I've said,
you know, that’s not good for you So my kids-I've
raised my kids and-and we’re pretty open about it, as
far as personal health issues I'm more like my mother

and my father, if I had uhm... if I have to have a
test uhm... I've had—I had a-a biopsy, I don’t even
think I told , you know, I mean that wasn’t breast,

it was, you know, down there but, I don’t think I
shared that with him”

In this passage Bambi admits that she did not think of her
personal health needs in relation to her family or her
husband, reverting to behaviors learned in childhood.
Cissie admitted to the same health description learned in
her family of origin:
“I passed along the, ‘If you don't have a temperature,
you're going to school.’”
Cissie
The practicality related to health for personal
responsibility continued in Cissie’s current family.
Some of the messages were unchanged overtime. Yvonne
described a definition of health that was similar to the
message she learned in her family of origin:
“Uhm... eating well, sleeping, <1aughs> getting your
rest, getting lots of exercise, uhm... making sure
that your— your health issues are taken care of
promptly.”
Again, the need for personal responsibility was part of the
health definition for Yvonne.

While many of the women have expanded their definition

of health to include the perception of prevention as part

161

of personal responsibility, only messages related to
nutrition and rest persisted as behaviors learned in the
family of origin. None of the women described cleanliness
or dental care as essential components of health. Along
with prevention, exercise, obesity, and particulars like
cholesterol and blood pressure were identified as
indicators of ‘health’. The definition of health has
changed over time, with some women indicating this change
resulting from increased access to knowledge.

To understand if the discussion of health included a
message of personal need in relation to the family,
respondents were asked how they discuss health in their
current family. Kim praised the knowledge obtained by her
children through the school system and acknowledged the
role this played in family conversations. She also
indicated a continuation of the health behaviors she
learned from her mother:

“Well actually, because they’ve all had to take health

classes at school, they all have this general

knowledge of stuff. And I think kids at certain ages
are just more inquisitive about something. And we
have a pretty open conversation policy that we can
pretty much talk about anything. And anytime anything
comes up health-related, and sometimes the kids will
bring it up, or they heard something at school and
they didn’t think it was quite right, so they’ll come
home and ask me if, “I heard that blah, blah, blah.

Now is- is that true?” And it usually sparks a--

sparks a conversation about health or health-related
issues. And I think I might have picked up some of my

162

mother’s tendencies, but I’m always, “Put your hat on,

you know, put your shoes on. Don’t go outside. Cover
up your nose. Don’t breathe in all that cold air.”
And so I think they get a-- they get a full dose of
it.”

Kim

The health messages clearly indicated a focus on personal
need, but did not describe a relationship between the
individual and the family.

The health discussions described by Coffy focused on
personal activities:

“Oh weight and getting a-getting weight under control
uhm...”

Health defined and discussed within Coffy’s family of
origin and her current family experience consistently carry
a theme focused on the relationship of health to eating and
weight.

Maya identified a change in the discussion of health
between her family of origin and her current family. She
stated:

“Yes, ml mean HIV?mI think I told my daughters. I
said, “You know, when I was a young girl growing up, I
think that what my family or what my mom tried to
introduce to me was that you don’t let anybody touch
you down there, because you might get pregnant,”m And
I said, “You know, that’s not what you need to be
concerned about today.” I said, “Today if it was a
baby that meant something,” I said, “That’s a good
sign." I said, “What happens now is that when you get
into intercourse and just experiencing with sex and
you’re not married,” I said, “That sets you up for
death." <Laughs>.

163

This message illustrated a change in the content of the
message that continued to be directed toward personal
responsibility and health needs.

Sojo also noted a change in the discussion as a result of
increased access to information. Sojo stated:

“Now, it’s all open. We all are on the Internet.

When we do get together-- as a matter of fact with our
last family reunion-— because it was the year 2000, it
was coined “Heritage into the Future.” What’s our
responsibility? Because all the older people now is
getting down to us in our 40s and 305 to run this
whole affair. And so what do we want it to reflect?
Just a good time and lots of food? Or some
information about what we do know that our family has
a history of diabetes. We have histories of
hypertension. We don’t necessarily have histories of
cancer, but there have been problems with that and
different things, so what do we want to know about it?
Are your children being immunized? And certainly we
have lots of people now in the family that are in
medical fields, so share the information. Tell the
things that are available. And so that was one of our
project to make sure.”

This passage also illustrated a clear understanding of the
relationship between personal needs and the family. In this
case, Sojo described the importance of sharing health
information with her extended family.

Rose described a change in the conversations. Rose stated:
“It’s open. Our conversation now is open, and the
reason it’s open is because it was so closed for me in
growing up. You know, I was just so ignorant to, you
know, things that I didn’t know. And so whatever is
happening or going on with anybody in the family, hey
lets sit down and discuss it. Lets talk about it and

see, you know, what we can find out. So it’s an open
discussion. And they know pretty much, you know, if

164

they have a question, you know, we can do and do some
research and find out.”

Rose indicated deliberateness on her part to make a change
so that her children did not have the same experience as
she did. She too indicated an understanding of openness
within the family related to health discussions.

Amy recounted a story that indicated a lack of
communication related to personal health needs and the
family from an experience with her husband. Amy stated:

“I'm really a nervous mother about anything, I'm the
one in the family that prompts everybody to go to the
doctor, I mean I had to tell [husband], he had a lump
in his testicle that he had-didn’t say anything to me
about it, but he-he had it for like a year and a half,
and he never did anything about it,mAnd I made him gom
and he went and finally got a physicalmand [doctor]
said that’s just the scar tissue from your uhm... your
vasectomy. And it's like “Why didn't you do that the
minute you felt it, why would you put yourself through
that worry and then if you don’t have to worry if it's
nothing, it's nothing, and if it's something, then you
get it fixed right away and you have a better chance?”

Amy expressed frustration in this action but did not

indicate that her husbands’ failure to seek health care had

any relation to the family.

Hayley described deliberateness in not openly discussing

personal health needs within the family. She stated:
“Probably uhm... probably all of us. Like we include
[children] you know, pretty much everybody if it’s
concerning them. If it’s us goin’ to the doctor, you

know, we really don’t say much to ‘em but uhm... just
try to get them to stay healthy.

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While the discussion prompted the children to “stay
healthy”, there was no indication of the relationship
between personal health and family.

Cissie mimicked the “practical” component of the messages
learned in her family of origin. Cissie stated:

“We are very practical and I try to make sure that she
understands how important-- well, you know, taking
care of yourself is, in terms of—- of course, you can
try to tell your kids that they actually do need to
sleep in order to stay healthmeou know, eat right,
let your body rest, get some exercise; all those
things that we know is smart you know, and some of the
stuff that I’ve told her about those kinds of—- the
cause and effect kind of things."

Cissie also noted a change in the way health related

information was discussed in her family of origin compared

with her current family. Cissie stated (in referring to

her daughter):
“She’s starting to realize that it is truemAnd I’ve
been very open about, you know, when she’s-- I’ve been
trying to say, “When you become sexually active,
please let’s get on birth control.”mAnd our generation
is in general much closer to our daughters than
previous-- than we were to our mothers, that’s for
sure. So—- my mother still won’t accept the idea that
I’ve actually had sex, you know, almost fifty, “No, we
don’t,” you just don't even think about that."

While more open in the topics discussed, there is no

indication of concern for personal needs in relation to the

family.

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Yvonne described a similar pattern learned in her family of
origin. Yvonne stated:

“Uhm... we talk about eating the right foods and

getting the right sleemehm... we talk-- I talk a lot

about exercising, but I don’t push it on them
particularly.”
Yvonne clearly credits the mother-daughter connection when
asked to talk about the similarity. Yvonne stated:

“Oh absolutely it came from my mother. But I think

there’s a lot more information out there now too that—

- and I get regular publications from my health care

provider, uhm... from my school that I teach at, about

those kinds of things. So there’s a lot more things

to read about now than there used to be. But I think

the basis came from my mom. Yeah.”
Yvonne acknowledged her mother’s influence and the
influence of access to information. Respondents were asked
if they used sayings or adages to impart health information
within their current family. Most respondents focused on
the dissemination of nutrition related messaging that
mirror their definitions of health.

The respondents were asked to describe who was
responsible for health in their family of origin, who is
responsible for health in their current family, and to
describe the differences. These passages illustrate the

ongoing role of women as responsible for family health,

which remains unchanged across the life course.

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Kim described her belief that she was the responsible party
for health decisions in her family, stating:
“I think I'm—- I think I’m responsible for the health-
related decisions in our family. And- and I think my
mother ah... my mother was pretty much-- because she
was-- she was home, she was an at home mother, so she
was home and she made all the decisions.”
Kim
Kim also indicated that this role within her current family
was similar to that same role played by her mother in Kim’s
family of origin.

Maya succinctly offered her opinion, stating:

“It’s still the same. It’s the women."

While not directly stated, the use of the word “still”
indicates that women have been the directors of family
health across the generations within her family of origin.
Amy described a similar belief related to role
responsibilities:

“Probably. I took that role, I’m sure. I’m sure I
didmA man, woman thing. I think men just don’t—- at
least the men in my life, my dad, my grandpa, my
husband, my son, I don’t think they're-- maybe they
think about it, but they don’t verbalize it as much.
You know, like will tell me he’s got a cold or
something, but-— whereas ___’s just-- more borderlines
on a little bit hypochondriac I think.”

Amy

By comparing intergenerational attitudes of the men in her
family, Amy indicated health is considered within the

woman’s role.

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Bambi identified transitions from single to married and
then from married to having children when she discussed the
changes in role responsibilities from her family of origin
to her current family. Bambi stated:

“mso it was Mom’s responsibility to take care of the
kids and not Dad’s. Where and I both have always
worked, although I had a little more flexibility in my
being able to leave work because that’s how I
approached my job, it's like well, you know, I'm
responsible for the kids, so that’s how we approached
it and we, you know, that was what we agreed upon when
we got married is, you know, you're gonna share
things, back then, you know, you got married, husband-
wife, husband duties, wife duties <1aughs>, and those
aren’t defined like that now.”

This passage illustrated that in terms of marital

relationships and role responsibilities; Bambi noted a

change from her family of origin.

As described by the other respondents, women in Yvonne’s

family were responsible for family health.
“Uhm... certainly I think the- the woman in both my
families growing up was- was the guardian of health.
But I think that my physician is a lot more active, or
I’m a lot more involved with my physician that I used
to-- than I was when I was growing up. You know, I
don’t remember going to the doctor a whole lot when I

was growing up.”
Yvonne

Yvonne also described changes related to patient/physician
relationships that have changed over the life course, with

closer involvement noted.

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Respondents were asked to compare and contrast the
discussion or view of cancer and cancer screening within
their family of origin and their current family to
determine if life course factors influenced their decision—
making.
Kim described differences in the discussion of cancer that
is related to a better understanding of cancer. Kim stated:
I think the difference is uhm... cancer has a name. I
know-- I know-- I’m gonna say I know about it than
maybe my- my parents did. So uhm... when we discuss
it, it’s more on a educational basis, or in- in the
conversation And so we- we talk about it. And I think
as far as—- it’s more for a- an educational type thing
to just make your kids be-— make my kids be aware of
it, it is a sickness, it is an illness, it’s nothing
that that person did wrong to get ithnd that uhm...

yeah, it’s a bad thing, but there’s— there’s
treatments out there.”

Along with putting cancer in a positive context, Kim
related how she has used the positive attitude learned from
her mother with her current family, and that across the
life course; the message has changed very little. When
describing the discussion of cancer screening with her
family she stated:

“I think with me and my mom, I think she put that

importance in me, and I’ve tried to relay that over

to- to my family. So I think we discuss it. We

discuss it real open and honestly.”
Kim

170

This passage illustrated a deliberate effort on the part of
Kim to provide her family with a positive message that
seemed unaffected by life course transitions or events.
Coffy described her impressions based on her current
diagnosis of breast cancer. Coffy stated:

“Probably about the same but I don’t know, I d-it's-
it's not like it's this whole panic and everybody
let's go and do it ‘cause, I mean my mother was going
to the doctor on a regular basis and my grandmother
does, yeah it's just stuff like this-this happened and
what can we learn from this. So it's—I can't say it's
like a-a panic or an uh... of a worry or even like a
paranoia because of it, it's just more or less like
this happens.”

This passage illustrated a rather fatalistic viewpoint when
Coffy stated “ it’s just more or less like this happens”.
This viewpoint has persisted over the life course.

Maya described differences related to having access to
providers. The difference is a change in the perception of
trust that her family now experiences compared with her
family of origin. Maya stated:

“We have open communication. There’s dialogue. And
then I guess there’s-- if you don’t know something,
you have other people that you trust that you can go
ask that we didn’t have probably in the early days
when they were getting us doctors or saying doctors
were gonna do something different to us or whatever.
I think because of-— yeah. I think you have more
people that you can trust and depend that they’re
gonna give you a high quality service. And then you
have information and education and resources that if
you don’t agree, you can disagree and look elsewhere.
<Laughs>.”

171

This passage illustrated changes that have occurred over
the life course that lead to an inability to trust
physicians. Maya went on to say:

“Well I think there’s more effort, yeah, today than
what they were when I was growing up for health
screenings. So definitely we’re discussing more
outwardly and having open conversations about that
where it wasn’t-— as before it was secretivemBut now,
you know, we talk about it, we’re just informing one
another, but what we learn of the access mso we really
need to be really aware and making sure that our
children have that information and their children have
thatm”

While not specifically identifying transitions or events,

Maya acknowledged the changes that have occurred over time

across the life course.

Sojo described a life course event related to her uncle’s

diagnosis of cancer and the thoughts people had about the

disease. She stated:
“People used to think that cancer would jump off on
you. And not touch. And I think certainly my uncle,
he felt more comfortable with my mother, because she
just-- I can see them sitting together on that sofa
and being so loving to each other, where everybody
else was like shying away from him.”

Sojo learned from her mother that cancer was not to be

feared. Sojo goes on to talk about fear and lack of

knowledge related to screening for cancer. She stated:
“Yeah, because I didn’t know that ladies had
mammogramsmThere’s lots of different informationmAnd

so it [Pap smear] was not a good experience. It was
fearful. It was not comfortable. And I think now

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young ladies don’t think anything about thathut it's
not a fear that keeps you away”.

Over the life course, because of access to information,

fear has subsided.

Rose related the change in her personal view of cancer as

directly related to her work, a transition from losing her

previous job in banking to one in the health field as an

administration assistant. Although her job is not

clinically related, the exposure to the health field had

made a difference in her perception of cancer. Rose stated:
“The biggest difference is that I’m working at the
[health facility]. That’s the biggeSt differencemSo
then I try-- I want to get involved in things, you
know, like the breast screening, those things that
pertain to women, you know, first and foremostho I
want to just kind of move that from where I’m at today
or where I was yesterday and move that into where I’m
at today and be able to be an instrument for my family
to say, hey, you know what? I may not know all of the
answers, but, you know, this is what I've experienced
and this is what I’ve heard.”

As a result of the new position, discussions about cancer

and screening have become “more open”.

Hayley described that over the life course, the discussion

has become more open, stating:
“I think we’re more open now about it ‘n back then
you—-we didn’t know much about it and it was, you
know, just a scary, scary thing and no one talked
about it much, where nowadays it’s just <1aughs>, you

know, every time you turn around someone's getting
some kind of cancer.”

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While not specifically addressing cancer screening, Hayley

described that across the life course, individuals

experience cancer as an event.

Bambi described access to information as the single factor

that has changed discussions of cancer over the life

course. Bambi stated:
“Information, I don’t think that my parents had the
information, uhm... I have the information, my
children has the information, regardless whether it
came from me or it came from, you know, a class at
school or it came from some research they had to do
<coughs>, I just think there's more information
available now and I think it's more public, and I
think that’s what's made the whole difference between
my family and when I was a child, was the information
that’s available. “

Bambi also described her personal discomfort in discussing

screening with her husband, yet open discussions with her

female relatives, a change related to her transition from

daughter to daughter and mother. She stated:

“I still, you know, I don’t discuss it necessarily
with my husband but I discuss it with my mother, and I

discuss it with my-my children, it's just uh... an
uncomfort level, I guess I don’t know if it's because
I'm emotionally uhm... attached or there's an

emotional involvement that would be difficult uh...
would be an emotional issue if I discussed it with
[husband], where it's not so emotional with my mother,
you know, where if I discussed it with [husband] maybe
I just don’t want that emotional."

In this passage, Bambi described an inability in her

marital dyad to discuss feminine issues, but a change over

the life course in her ability to talk with her mother.

174

Cissie described the change in relationship to the feminist
movement and transitions she experienced over the life
course that she felt no longer existed among the younger
generation. Cissie stated:

“They didn’t know. They didn’t know. So this is -- so
it’s so disheartening to see how much our generation
and the women around our age, a little older who
really started that second wave of feminism that
started in the ‘60s and the ‘705 and made us partners
in our own health- in our own health regiment or
whatever. It’s really disheartening to see that it
looks like the next generation has just lost, you
know, lost that momentum so much.”

Cissie went on to describe screening in the academic manner
learned from her family of origin. Cissie stated:

“I think it’s much more just another list of the
things that you need to be doing to- to keep your --
to keep your health in check or to— to make sure that
uh... you know nothing is happening that you’re not
aware of. And so it’s just on that list of things that
you should go through. I’m trying to think of some
other —- you know, most of the- the -- like yearly or
whatever things that we go through, it's mostly geared
around cancer ”

This passage illustrated a matter of fact approach to the
screening process that has transcended the course of time
in Cissie’s family.
Like others, Yvonne described the change related to access
to knowledge. Yvonne stated:
“Well I think we, just as a general society, we know
more about it and uhm... I don’t have any problems

discussing it when it comes up. It’s just a-- just a
part of life.”

175

Yvonne described the change she noted in relationship to

providers. Yvonne goes on to say that in her current
family:
“Um hmm. Oh, yeah. Uhm... much more open

about, you know, you need to do this and,
you know, and- and again I think that’s kind
of physician prompted. You know, the
hemostat things that we do, and to the
physical and all of that kind of thing. We—
we my parents never did that kind of thing.”

Yvonne acknowledged awareness that over the life course,
openness about breast cancer screening has influenced
participation.

In response to Research Question Five, women described
transitions across time from their family of origin as
daughters, where cancer was never discussed, to their
current family where discussions of cancer are more open.
Some identify specific events like a family member who has
cancer or changes in work as factors that have influenced
their awareness and participation in screening. Most have
talked about societal transitions in terms of access to
information about cancer as having the greatest influence
in their current experience. Thematically, a change that
has occurred over the life course relates to messaging and
appropriate topics of discussion. Individual

responsibility persists, but the practice of selective

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health messaging present in the family of origin does not
persist in the current family.

Objective Three

Research Question Six: ”What factors described by women in
their decision to participate (or not) in breast cancer
screening can be described as culturally specific
attributes?” The responses to this question focus on
particular attributes of culture rather than the broader
cultural considerations previously discussed in terms of
learned behaviors, values and beliefs related to health
with implications for breast cancer screening. The examples
illustrate collective cognition and norms as described in
Appendix D.

To understand specifics the respondents were asked the
question “Suppose you could use one word to describe
yourself. What word would you choose?” And, “How does that
word describe you?” The ecomap (Appendix B) content and
relationships are presented in Appendix E. The depictions
of these relationships lend support for the manner in which
respondents described themselves.

Kim summed up her self-perception with:

“Uhm... I would have to say happmehm... well

sometimes being the happy one isn’t uhm... people

don’t understand sometimes just how can you go there?

This project is so bad, and how can you go there and
be so happy with it? And I think it’s because you

177

look down the road to what can be. So I try to weed
out all the negative things and just try to focus on
something positive. And sometimes I get kind of
stiffed with it, ‘cause I don't think taking my
happiness for a weakness or something, or don’t really
think I’m really serious, but uhm... that has
sometimes come back to kind of bite me, ‘cause they
think I’m so happy and bubbly that I couldn’t possibly
know what was really going on.”

Kim
Kim’s ecomap identified a good relationship with her
employers (Appendix E), but a close relationship with her
co-workers and peers. These comments indicate a collective
expression of attitude and cognitions (Appendix D).
Coffy described herself in the following way:
“One word. Faith My— my faith has sustained me
through life, but it's also ve- very active. Uhm...
It- it's sustained me through uhm... oh God, traumas
and- and uhm... probably something else you didn't
know either, I uhm... After undergrad, I— I got
married a year later, and in my- during my marriage we
had three children ”
The quotation goes on to talk about the deaths of her three
children. The church was identified as a good relationship
by Coffy and friends, who are part of her church circle, as
close relationships (Appendix E). This quote also
illustrated a collective expression of values (Appendix D).
Maya beamed when she described herself in the following
way:
“I think Maya would choose phenomenal Phenomenal means

that I am able to use that visionary that I see that
is so far fetched, not knowing how I’m gonna get

178

there, but in some ways seeing that there is that goal
or it is that vision, and rattling those persons
that’s necessary to get me to that goal. It may not
be me, but it’ll get there. <1aughs>"

Maya surrounds herself with good or close relationships, as
indicated from her ecomap, from friends to family and to
work (Appendix E). This quote illustrates a collective
expression of identity and emotion (Appendix D). Maya
described in other discussions her close identification
with her sorority and the Black Nurses Association.
Sojo smiled with delight when she described herself in the
following way:
“I got to go you know, I never even looked this word
up but I’m sure it’s me, eclecticht’s a holistic word
for me because I was raised to accept or experience a

lot of things, not the downside of life certainly, but
taste this food. This is caviar, because my parents

were caterers. Drink this tea. Miss Fuller [ph?],
Dr. Fuller’s wife said it came from England
especially, and smell it. It’s in a canister. Listen

to this music. Peter Fuller plays bagpipes, so I was
raised around a lot of things and totally taught to
experiment and not to just be discouraged about
differences in people or sounds of music or books, you
know, music. When I was a little kid, my favorite was
“Peter and the Wolf” and if you ever read it, if you
ever heard it, I mean. I heard it the first time I
heard it and along with that gift I received, oh
what’s the guy that George Gershwin, is it the
Gershwins?”

Sojo’s ecomap depicts “eclectic” relationships ranging from
close (family, household members) (Appendix E) to

conflictual (church, co-workers) (Appendix E). Sojo went

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on to describe her lack of tolerance for those viewed as
“using the system”. She clearly indicates individual
expressions of cultural attributes (Appendix D) in her
values and social behaviors.
Rose described herself in the following way:
“Servant The way that I’ve began to look at life, and
how it all relates to what we do in life, you know I
just look at myself more as a servant type of person,
a person who wants to help, a person that, you know,
wanting to fit in wherever, you know, they could be of
assistance. So, that’s why, you know I look at myself
as that type of a person, one that’s helping.”
Rose depicted close relationships with her family members,
in particular her daughter and mother (Appendix E). While
the relationship with her mother was strained as a child,
it has developed into a close and valued interaction.
Collective expressions are evident in motivations,
attitudes, roles, and values (Appendix D). While I thought
of the use of the word servant to be pejorative, her
explanation described a commitment to her family.
Amy struggled when describing herself:
“I guess the one that keeps coming to mind is one that
isn’t uhm... very flattering but it's uh... under-
confident, because I feel that that’s, you know,
something that I have to work hard to get over. So I
would say I'm-I'm under—confidenthell uhm... as I've
been more involved in the community and, you know,
lived my, well, seventeen years here in [city] one of
the things I feel under-confident about is uhm... my
lack of education, that I don’t have a college degree,

that-that bothers me. Uhm... I'm getting better about
different things being in groups of people and

180

speaking and, you know, socializing and different
things like that, but I think that-that’s a big one
with me, that I feel uhm... under-confident because I
didn’t go on to get a higher education.”
Amy’s depiction of relationships is reflected in her ecomap
as a close relationship with her father and a conflicted
relationship with her mother (Appendix E). While having
close relationships with her household members, the “under-
confidence” relates directly to her decision to become
pregnant and marry directly out of high school rather than
going to college. These comments are examples of
individual expressions of identity and emotion, as well as
responsibility (Appendix D).
Hayley’s affect was flat, with little facial expression and
a flat tone of voice, when she described herself in the
following way:
“I’m probably pretty reliable, I guess, and I always
do what I say I’m gonna do, and I’m a pretty kind
personmUhm... Pretty well I guess just through my job.
I’m pretty loyal and uhm... always there, always on
time, never miss a day. I guess maybe I don’t know if
<1aughs> that’s good or bad. And uhm... I don’t know,
I just have a lot of friends and so —“
Hayley
These comments are reflected in her ecomap, describing her
employers and friends as close relationships (Appendix E),
which are examples of collective expressions of attitudes

(Appendix D).

Bambi laughed and chuckled as she described herself as:

181

“Cheerful”

And went on to explain the rational for her choice:

“Well most of the time I try to always find the
positive in any situation, you know, whether it be at
work, personal, home, I-I just-I’d rather be positive
and happy than negative and angry I think it has
because I don’t-I try not to hang onto anger, and I've
seen people that do and it makes ‘em very unhappy,
very cranky, unhealthy people, I see that in everyday
life, you know, people just have a negative at about-
attitude about everything or anything, and you really
can't-even when you say “Oh it's not that bad”, “Oh
you don’t know”, you know, I-I really don’t like to
talkin’ to people or being around people like that. So
1, several years ago, decided, ‘cause my Mom’s kinda
like that, I don’t wanna be like that, so I
consciously tried to make that change because it's
better for me physically, emotionally, it's just
better for me.”

Bambi

These comments are reflected in Bambi's ecomap description.
She describes no relationship with a church, distant
relationships with friends, neighbors, and health care
providers (Appendix E), conflictual relationships with
siblings and other family and members (Appendix E) and, a
stressful relationship with her co-workers and peers
(Appendix E). Bambi also described in previous comments
the conflicted nature of her family of origin. These
comments are illustrative of an individual expression of
motivation (Appendix D).

Cissie’s response was interesting and the most descriptive

and introspective of all. She described herself as:

182

“Multi-faceted I have many different ways of looking
at the world. I look at the world in artistic ways.
I also look at the world in very practical ways. It's
kind of— I'm a right-brain person and a left-brain
person. I can't say that I'm balanced, but I try to
keep some kind of a balance, and my nature— my dual
nature tends to balance those out. Because if I get
too right brain and flaky, then my other side takes
over and starts imposing order on that. And if I get
too orderly, then my free-floating side starts to say,
"It's time to lighten up and not take this so
seriously, or whatever." So, I think that dual nature
tends to keep me balanced, so I have lots of different
interests. I love theater, arts, music, some science,
history. There are some things about math that I
really love. In terms of academic kind of stuff, or
even pleasurable stuff, but I just have a lot of
varied interests, and I enjoy learning about
everything, and having those connections take you
someplace else to learn about something else. And
more connections take you, and eventually you find
somebody who has been involved in learning about
somebody else.”

Cissie

Most of the relationships depicted on Cissie’s ecomap are
close or good, with the exception of a stressful
relationship with her mother due to long distance
caregiving (Appendix E). The comments in this quotation
and further discussions related to Marxism and communism
are a combined reflection of collective expressions of
social behavior and values with individual expressions of

values also (Appendix D).

Yvonne described herself in the following way:

“Hmm. One word. Uhm... vibrant <Laughs>. Well I
just feel like I- I just love life. I love
everything. I love-- like I said, I love learning,

183

uhm... and I feel very alive and very invested in my
life and the life of the people around me.”
Yvonne

Yvonne’s ecomap identified close and good relationships
with the exception of co-workers and peers (unrelated to
who she identified as colleagues) (Appendix E). Her
educational background is music and theater, and she
travels extensively with her husband, offering support for
her self—description as “vibrant”. The cultural attributes
most closely reflected in this description are an
individualistic expression of values (Appendix D).

In response to Research Question Six, most of the
respondents expressed collective attributes in describing
themselves supported by their ecomap depictions of
relationships. However, the overall descriptions provided
to Research Question Five depict the individual cultural
belief systems present in the United States. For example,
expressions of personal responsibility for health and
breast cancer screening are individual expressions of self-
perception. That is, each individual woman interviewed
described themselves as responsible for their health or
decision making related to the use of screening services
while each described themselves as members of families.

Their self-perception was not based on the relationships of

184

those around them. Cognitively, each described a focus on
personal needs reflective of an individual expression
rather than making their health decisions based on the
needs of the family first. Motivation for participation in
breast cancer screening and other health related activities
indicated individual expressions, with most women
identifying their individual need for the use of services.
Therefore, while women describe and depict relationships
supportive of their decisions in a collective sense, the
actions described by women in their decision making related
to the use of health services and cancer screening
reflected individual expressions of cultural attributes
(Appendix D).

It should be noted that the concepts of culturally
specific attributes in terms of collectivism versus
individualism were most evident in the responses of women
and their family relationships. Rather than finding ethnic
or racial differences, the women were similar in their
expressions. This disputes the stereotype that White and
African American women are different and that African
American’s are “more collective” than Whites based on their
heritage. Instead, the findings suggest risks with over

generalization and stereotyping based on a false dichotomy.

185

Summary of Findings

This chapter presented the major findings from
interviews of ten African American and White women between
the ages of 40 to 51, who have middle incomes, and access
to health insurance. The data revealed that health
beliefs and values as learned behaviors in the family of
origin translate into similar health beliefs and values in
the current families for all women. Increased access to
information has transformed the messages to factually based
accounts for all women. In all cases, cancer as a topic of
discussion was inappropriate within the family of origin.
Most of the women described the topic as taboo and their
understanding of cancer in the family of origin as unclear.
Most also indicated that they felt their families did not
know enough about cancer to discuss the disease.

All women described their mothers as guardians of
family health. This role-related belief persists within
the current family, even though some women describe their
husband’s involvement in health related decision-making.

In terms of breast health, women described a form of
selective health messaging in their family of origin. That
is, mothers in the family of origin openly discussed
strategies related to general health, but selected messages

for breast health unrelated to cancer. Largely, breast

186

discussions were vague and frequently in the context of
sexual behavior.

Across the life course, increased access to knowledge
seems to have made the biggest difference in the messages
women impart with their daughters about breast cancer
screening and that influences their personal decision
making. Few women directly described family relationships
as important factors in their decision to participate in
breast cancer screening. Some mentioned access to the
services, insurance, and physicians as positive influences.

Health access in the family of origin, on the surface,
was similar among all respondents regardless of
racial/ethnic identity. However, among several of the
women, the access was directly related to their mother’s
employment, which afforded them special privileges. While
all women had access to providers, the mechanism allowing
that access was different for African American women than
White women. All of the African American women described
their mothers as employed (service based), and all of the
White women described their mothers as homemakers who had
access to insurance through their spouse or could afford to
pay for services.

Responses revealed cultural beliefs in terms of

learned behaviors, communication and decision-making.

187

Overall, these reflect the individualistic nature of the
culture of the United States. However, when examining the
particulars of personal descriptions and ecomaps, women
portrayed collective attributes, indicative of the
socialization of women as family caregivers. Unlike the
stereotypic expectations that African American women are
“more” collective than White women are, all the women in
this study portrayed collective characteristics.

Chapter 5 will provide discussion of the findings in
relation to each of the research questions, limitations of

the study, and implications for future research.

188

Chapter 5

DISCUSSION
Overview

The purpose of this study was to explore family
ecosystem and life course factors associated with women’s
participation in breast cancer screening. The exploration
was accomplished through interviewing ten women between the
ages of 40 and 51 years, five of whom were African American
and five who were White. Ecomaps also were used to
determine relationships viewed by the women as strong and
supportive. Responses provided support for the theoretical
foundation of this study and led to an understanding of the
influence of learned health behaviors on decision-making
and breast cancer screening. Discussion of the findings is
presented in three sections. The first section addresses
the theoretical foundation and changes to the conceptual
model based on the findings, the second section examines
the themes in the findings, and the third section explores
limitations and recommendations for further research.

Theoretical Foundations

Two theories served as the foundation for this

research. These theories included the family ecosystem

theory by Bubolz & Sontag (1993) and the life course theory

189

by Bengston & Allen (1993) and Price, et al., (2000).
This study supported Bubolz & Sontag (1993) family
ecosystem perspective of the social/cultural environment in
relationship to values and beliefs about health and learned
behaviors. The family ecosystem theory (Bubolz & Sontag,
1993) describes the social/cultural environment as the
location of cultural constructions in the form of norms,
cultural values and patterns of behavior. Values of a
culture become evident in the choices made in the pursuit
of a goal (Sowell, 1994). Health was evident as a value
among all the participants. Learned health behaviors were
evident in the descriptions women gave about their families
of origin and the messages about health relayed to them by
their mothers. These learned behaviors were transmitted to
their own families in health messaging. While the content
of the messages changed over time as a result of
improvements in the human technology environment (increased
access to information and improved technological advances),
health messages learned in the family of origin were
transmitted to the current family.

Most of the women in the study spoke of the family
(the environed unit) in terms of their immediate family
consisting of spouses and children, with parents (mothers)

as extended family members. Several of the women who were

190

not married at the time of the interview described their
mothers as part of their immediate family. Ecomap
descriptions demonstrated the strengths or weaknesses of
the relationships women viewed as most important in support
of their environed unit and their social/cultural
environment.

The human built/technological environment, described
as access to health care services, is an important
consideration within the families of origin of the
participants in this study. All women described having
access to health care services. All were raised in urban
or suburban communities, increasing the availability of
health care resources. This relationship may have
contributed to the use of health care services by women
both in the families of origin and current families.

The life course theory as described by Bengston &
Allen (1993) and expanded by Price, et al., (2000) asserts
that the individual, as a member of a family or social
unit, changes over time. As a result, temporal dimensions,
social contexts, development, diversity and aging influence
the individual across the life course. The health messages
women received within their families of origin changed over
time in terms of the topics viewed as appropriate. Temporal

influences related to history include the manner in which

191

breasts were discussed. Either there was no discussion or
the topic was discussed in relationship to sexual activity.
Some of the African American women discussed their
perception of the learned health behaviors within the
context of the 1950’s and the 1960’s and the socialization
of children regarding racism. Health messages involving
nutrition were consistent across the life span. Less
consistent were messages about dental health, cleanliness
and rest.

Learned behaviors about health consistently appeared
as evidence of culture within this study. Data collected
in the interviews and the ecomaps were used to identify
particular cultural attributes of these women. Triandis
(1995) noted that culture is responsible for “different
levels of social support and also for different kinds of
interpretations of life events.” The responses were
examined for cultural attributes and to explore the
expression of culture through behaviors as suggested by
Sowell (1994) rather than to measure cultural differences
between the respondents. Each of the women identified
learning health behaviors within their families of origin.
The behaviors specific to nutrition continue to be used in
the current families. Most of the women learned about

breast health as adults and have adapted their health

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messages within their current families to include breast
health information. As deScribed by Lytle, et al. (1999)
families of origin did not prioritize prevention messages
related to breast health. Instead families avoided the
breast as a topic of conversation or presented it in terms
of sexual development. Consistent with the Lytle study,
African American women spoke in greater detail about
nutrition than the White participants.

Across the life course, decision making related to
health within families of origin and current families
remained a role of women. Denham (1999a) described mothers
as responsible for family health. Gendered roles for women
across time include those specific to caregiving (Baca Zinn
& Eitzen, 2002). Within this study, mothers facilitated
the health—related decision making for their children,
wives for their husbands, women for themselves, and
daughters with their mothers.

Decisions for participation in breast cancer screening
were made personally, based on values about health and
beliefs about the appropriateness of screening. These
decisions were made after recommendations from providers or
from information reviewed by the women. As described by
Plager (1999) family legacy contributed to the decision—

making processes used by these women. Each of the mothers

193

in the families of origin participated in activities that
contributed to the development of family meanings about
health concerns. Each of the respondents acted upon these
meanings that resulted in specific practices focused on
promoting individual health behaviors (Plager, 1999).

Life course transitions and events were less evident
as influential for women in decisions about breast cancer
screening. While many of the women had experienced the
divorce of their parents or personal divorce, none
identified divorce as the reason they did or did not
participate in screening. Several women did identify
access to insurance resulting from their own employment as
influential in their decision to participate.

Figure 2 (first presented in Chapter 1) depicts the
factors conceptualized as influencing the decision to
participate in breast cancer screening. Figure 4 presents
a revised conceptual map reflecting changes. In Figure 2,
the factors influencing the decision to participate in
breast cancer screening were represented as solid or broken
lines linked to the decision. Those within the shaded area
were considered as factors within a cultural context
influencing a decision. Factors outside of the shaded area
represented factors thought to be irrelevant for this study

and eliminated in the sample selection process. Race was

194

highlighted because only African American and White women
were interviewed. Changes to the model (Figure 4) were
made to clarify the conceptualization based on the
findings.

In Figure 4, health related behavior represents the
social and cultural expectations for a health behavior. The
behavior is linked directly to the person who develops an
awareness of need for a particular behavior. This
awareness is then filtered through the cultural context of
the individual as a member of an environed unit with
beliefs, values and health knowledge. Other factors that
may or may not influence the decision to participate
include insurance, education, income, race, and the life
course. Taken together, these factors influence the actual
decision-making related to breast cancer screening (Figure
3 in Chapter 1). The decision making process includes the
value of health, a recognition of need, a standard set for
annual screening and the goal of obtaining the screening.
As an outcome, women chose to participate in appropriate
screening services. For example, within this study each
respondent identified the value of health, each recognized
the need to have a mammogram starting at age forty, each
acknowledged the standard for having an annual mammogram,

and each identified the goal that they would have a

195

mammogram. Only one of the participants acknowledged that
they procrastinated when it came time to actually
participate in the screening.

As the recommendations for screening are considered,
in terms of personal responsibility for health within the
context of the environed unit (Bubolz & Sontag, 1993) the
individual makes a decision to use or not use, breast
cancer screening. The meaning of health within the family
as part of family legacy is demonstrated in the personal
behavior (Plager, 1999) to act on recommendations for
screening. Figure 3 in Chapter 1 represents the decision
making process of breast cancer screening which remains
unchanged and is ultimately reflected in the use of
services. For example, each of the women valued screening,
recognized the need, and acknowledged the standard and
either participated or planned to participate in screening.

The changes in the model reflect the greater influence
of the development of learned health behaviors within the
family of origin and their use in the current family.
Family communication and the development of learned
behaviors occur through the exchange of messages
(Fitzpatrick, & Ritchie, 1993). The interactive process of
communication within the family (Bubolz & Sontag, 1993) is

an important consideration in the development of learned

196

Figure 2. Conceptual Framework: Factors Influencing

Decision Making (Chapter 1).

.........................
......

     
       
    

  

  

 

Insurance
‘ o
I .........
Race l
' ' EducatiOn
o o‘a
The
Knowled e . .
g deCiSion to
participate
in breast
cancer
screening
\
Beliefs \y, ................
Income

................
""""
.
......

Life -
Course
Transition

.....
........
...............

197

 

Figure 4. Revised Conceptual Framework: Factors Influencing
Decision Making

 
     
   

  

Health
Related
Behavior

 
   
   
   
 

Awareness
Of
Need

 

 

 

 

V
Insurance
Race
N: *—*>
\ / Education
The decision
Knowledge to
participate
in breast
cancer
screening Income
Beliefs
Life Course
Values Transitions/
Events

 

 

 

 

 

 

198

health behaviors and is influenced by the encouragement of
the family of origin to express or to censor specific
topics (Ng, et al., 2000). As a result, each of the
participants learned the value of health within the family
of origin and translated the meaning of these health
behaviors into prevention related activities.

The next section presents the key findings. The
respondents in this study provided examples of how the
health belief systems within their families of origins
formed their current belief systems and patterns of
behavior.

Key Findings

Analysis of the data revealed five themes as factors
contributing to the use of health care services and breast
cancer screening. Learned health behaviors, knowledge
dissemination, selective health messaging, access to
services, and personal responsibility were consistently
identified throughout the interview data. The dynamic
nature of the individual within the life course, as
described in Chapter 2, influences decision-making
processes. The five themes that emerged describe the
health values, belief systems, and decision making of the
women participating in this study. Table 3 provides a

description of the relationship between the research

199

questions and the coding used to analyze the data with the
key findings. Each of the themes supports the six research
questions.

Theme One: The Influence of Learned Health Behaviors

The influence of learned health behaviors on the
respondents is presented first because learned behavior
influences all other themes. Learned health behaviors
(Denham, 1999a) within the family of origin either directly
or indirectly affect women’s decision making related to
their personal family health across the life course. This
knowledge has implications for breast canoer screening
participation.

Women have been responsible for family health across
the life course. As described by Denham (1999a), health-
related practices are affected by social and cultural
contexts, but are learned through family health routines.
Each of the informants discussed similarities in the manner
of incorporation of health knowledge within daily practices
especially related to nutrition. As in the Denham (1999a),
study families of origin played important roles in shaping
health beliefs and practices. These learned behaviors
related to health were influenced by social contexts

including pamphlets, brochures and social support systems

200

Table 3

 

 

Research Questions Linked with Codes and Key Findings
Research Question Coding Scheme Theme

1. How do women FOH-family of origin health I. Learned health

describe their health FOH— family of origin behaviors

needs in relation to
their family?

2. Where do women
learn about their
breast health needs?

health discussions

FORHD- family of origin
relationships health
decisions

FOHB- family of origin
health beliefs
FOBC-family of origin
breast cancer
FOBCD-family of origin
breast health discussions

3. Selective
health messaging.
5. Personal
responsibility

3.Selective

health messaging

5. Personal
responsibility

 

3. What are the
effects of life course
transitions and events
experienced by women
on their participation
in breast cancer
screening?

LCTFOA—life course
transition family of origin
LCTCF-life course
transition current family
FonBCD-Family of origin
current family breast
cancer decisions

1. Learned health
behaviors

2. Knowledge
dissemination

4. Access to
services

 

4. What family related
factors do women
consider when making
the decision to
participate or not in
breast cancer
screening?

CFH-current family health
CFBC-current family breast
cancer

2. Knowledge
dissemination
4. Access to
services

 

5. How do women
perceive their family
relationships, life
course transitions and
events as influential
in their decision to
participate in breast
cancer screening?

CFH—current family health
CFHD-current family health
discussions

FORHD-family of origin
relationships health
decisions
FORBCD-family
relationships
decisions
CFRHD-current
relationships
decisions
CRFBCD-family of origin
current family breast
cancer decisions

of origin
breast cancer

family
health

2. Knowledge
dissemination
3.Selective
health messaging.
5. Personal
responsibility

 

6. What factors
described by women in
their decision to
participate (or not)
in breast cancer
screening can be
described as
culturally specific
attributes?

FOHB-family of origin
health beliefs

FOBCB-family of origin
breast cancer beliefs
CFHB-Current family health
beliefs

CFBCB-Current family breast
cancer beliefs

201

1. Learned health
behaviors

3. Selective
health messaging.
5. Personal
responsibility

of other women. For example, respondents discussed
receiving information from providers, health insurers, and
on television and radio and with women friends and
relatives.

Goodman (2001) suggested exploring conditions of life
that affect health rather than racial differences and the
use of race as a proxy for variations in health. Goodman
described the underlying reasons for health differences
that often go ignored in terms of access to medical care
and diet. These reasons were not evident among the
respondents, either within their families of origin or
their current families.

Bubolz and Sontag (1993) family ecosystem theory
depicts the interactive processes between families and
their surrounding environment. The adequacy of the
environment in providing opportunities to meet the needs
and values of the family is part of the interaction. All
of the participants described similar patterns of learned
behaviors related to the use of health services, especially
during times of illness or injury. Only a few of the women
described learning prevention behaviors (immunizations or
dental health) in conjunction with the health care system.

The participants demonstrated the role of family

legacy (Plager, 1999) in their development of meaning about

202

family health concerns. Families then put the meanings
into practices, habits, and activities. Across the life
course, nutrition has remained connected to descriptions of
health, and each respondent described how this information
was used as learned behaviors within their current
families. Women as arbiters of health within the family
have remained constant across the life course. Learned
health behaviors, as part of the cultural context,
influence the manner in which women describe their health
needs within the family.
Theme Two: The Influence of Knowledge DisSemination

The dissemination of knowledge across the life course
has changed from families having limited knowledge about
cancer to the availability to knowledge in a variety of
forms. As a result, increased knowledge has affected the
decision making of each respondent and the use of breast
cancer screening services. The influence of knowledge
dissemination is closely related to learned health
behaviors. Because health behaviors are developed,
maintained and changed within the family setting (Campbell,
2000) each respondent learned about behaviors to remain
healthy. As knowledge improved, each woman described a
translation of this knowledge into prevention related

behaviors. This translation occurred most often in

203

conjunction with recommendations from health care
providers, personal experience with cancer or through
conversation with other women.

Women’s roles included teaching and modeling healthy
behaviors within the families of these respondents as
described by Denham (1999b). Women’s role responsibility
for family health (Denham, 1999a) has changed little over
the course of time. While some of the respondents spoke of
male family members participating in the health decision-
making process, each respondent ultimately decided upon the
knowledge that would be disseminated within the family.
Respondents described decisions to include health knowledge
as based on having more access to information from
physicians, insurance companies, and through their
children’s school systems. Bubolz and Sontag (1993) family
ecosystem theory supports the interactive nature of these
social and cultural environments as a contextual backdrop
for dissemination of knowledge. The application of the
life course and family ecosystem theory to dissemination of
knowledge would explain the respondents’ descriptions of
ways in which discussions of health and cancer have changed
from their family of origin to their current family

experience.

204

Theme Three: The Influence of Selective Health Messaging

Selective health messaging is presented separately.
Selective health messaging relates to the specificity of
the health message women received within their families of
origin and conveyed to their current families rather than
knowledge.

The interviews revealed that health behaviors were
learned within the family from women, and that overtime,
these health behaviors were adapted and altered to fit the
need of the family based on the current knowledge
available. As described by Misra & Aguillon (2001),
childhood is the time when health behaviors and lifestyle
patterns are established, and these behaviors persist
throughout adulthood. Each of the respondents described
behaviors they learned in childhood (nutrition) and how
they used the same messages within their current families.

Parents represent one of the most influential groups
in the acquisition of health promotion behaviors such as
eating behaviors and smoking (Misra & Aguillon, 2001). As
depicted within the ecomaps, women identified strong family
and support systems used or considered in their decision—
making processes. Women frequently identified their
mothers as the messenger of health within the family of

origin. However, the health messages relayed to the

205

respondents by their mothers were selected according to the
appropriateness of a topic (breasts) or the amount of
knowledge related to a disease (like cancer). As described
by Lytle, et al., (1999), the selection of topics may be
related to the low priority the families placed on the
topic or general avoidance of the topic. Overtime,
respondents identified that peer groups (female friends and
siblings) participated in health discussions to a greater
extent than with their mothers. The phrase “selective
health messaging” is used to describe the manner in which
women learned about health behaviors.

Communication was not recognized in the beginning of
this study as one of the key components of consideration.
However, communication is one of the most significant
interactive processes within the family ecosystem (Bubolz &
Sontag, 1993), and involves the use of a variety of
techniques to transmit information. Within the families of
these respondents, the content of health messages and
openness of discussions has changed over the life course
relative to the appropriateness of certain topics. Huang
(as cited in Kelly, et al., 2002) states, “Family
communication patterns and styles influence children’s
attitudes and behaviors”. So, while little is known about

the influence of families on health behaviors [of

206

adolescents] (Lytle, et al., 1999), the types and content
of messages transferred from parent to child lend meaning
to specific topics, such as cancer. Because of this
awareness of the value of communication within the family
in relationship to health messages, a review of
communication within the family was added to the literature
review.

One way that culture is reflected within a group is
through language (Sowell, 1994). Among the African
American women in this study, some of their families of
origin used adages to convey health messages. Adages have
been used to impart health messages. For example Abraham
Lincoln referred to alcohol as ”intoxicating liquor” while
addressing a temperance society in 1842 (Klatsky, 2003).
While the conservative society at that time disapproved the
reference to alcohol, recent research has demonstrated the
benefit of “reasonable” alcohol intake and the development
of coronary artery disease (Klatsky, 2003). Adages such as
“a picture is worth a thousand words” have been used to
describe the mentoring necessary to inspire students toward
a lifetime of physical activity (Butler & Anderson, 2002).

Content and language used to describe a topic create
meaning. Language and meaning in everyday life is

identified as a core assumption of ethnomethodology

207

(Gubrium & Holstein, 1983). From an ethnomethodological
perspective, the real world of things is constituted by
“language in interaction" (Gubrium & Holstein, 1983, p.
655), producing social organization within the family and
assigning meaning to social conditions.

Cancer, within the families of origin of these
respondents, was not discussed. Most of the women
described their families as having little knowledge about
cancer and as a result, the topic was seldom discussed.
Respondents noted a change in their perception of cancer
that has changed over time with increased knowledge. Most
of the respondents learned to fear cancer due to the lack
of discussion of cancer within their families of origin.
Each described a change in the meaning of cancer as a
result of increased knowledge and appropriateness of cancer
as a topic of discussion.

All respondents described the lack of attention paid
to the dissemination of breast health information within
their families of origin. While several women said that
breasts were simply not discussed, others remembered the
breast health information they did receive in direct
relationship to the sexual nature of breasts and avoidance
behavior. Several women also noted that over time,

discussions about the breast have become an appropriate

208

topic with their mothers as they share breast cancer
screening concerns.

Intricately woven within the selective health-
messaging theme is the influence of learned behaviors and
knowledge dissemination. Over the life course, these women
learned about health behaviors and learned that the breast
is sexually connected. With increased knowledge over time,
these women have transferred the idea of health to breast
health and have made decisions related to their personal
breast health based on a change in these learned behaviors.
The women have also adapted the new information about
breast health to their family discussions and the
transmission of learned health behaviors.

Some of the greatest increases in the incidence of
breast cancer over the past forty years have occurred at
times when celebrities acknowledged their breast cancer
(Corbett & Mori, 1999) and the news media has informed the
public about the disease. It is within this same forty-
year time frame that women in this study noticed a change
in the way that breast cancer was discussed in their
families of origin and their current families. The
selective health messaging process appears to coincide with
increased knowledge that leads to a change in the belief

system.

209

Theme Four: The Influence of Access to Services

Access to services in terms of transportation,
insurance, and education has been addressed throughout this
study. The African American women in this study provided a
unique view of access within their families of origin that
may have changed over time in direct relationship to their
employment.

As described earlier, women of color traditionally
receive the lowest wages, perform the worst jobs, or are
unemployed (Baca Zinn & Dill, 1994). Historical factors
associated with the economic strains experienced by white
women include low work force participation, less work
experience, and less education (White and African American
women) than males. These issues contribute to fewer
resources for women in terms of social security, pension
accounts and personal savings and less access to the best
health insurance. The work of African American women
changed over the course of time in response to historical
changes. As described by Schneider in her review of the
book, “Maid in the U.S.A." (1998), African American women
entered domestic service first in Southern cities then
North and Midwest metropolitan areas in response to two
events. First, White immigrant women left the domestic

arena for more lucrative jobs in the early twentieth

210

century and during the Depression and World War II. From
the 1960’s on, African American women began to leave
domestic service as social change brought about other labor
market opportunities.

Some of the African American women in this study had
mothers who worked as domestic servants and had access to
health care directly as a result of their employment. While
they did not have access to insurance, they did have access
to health care from their employers, and this carried over
to the family members and friends of the women employed as
servants. The respondents in this study shared distinct
memories of having access to health care as a result of
their mother’s work. Access to health care is dependent
upon health insurance. Access to health insurance occurs
through participation in the labor market directly through
one’s own employment or indirectly through spousal
employment.

While the socioeconomic status has changed over the
course of time for these women, the health values have
remained the same (Bubolz & Sontag, 1993). However,
interaction with the health care system (the social and
cultural environment) has become dependent upon the
availability of insurance and income. The African American

respondents had access to health care through their

211

mother’s employment, but are now dependent upon access to
health care through insurance. The informal system of
access is no longer possible due to the formalized and
regulated health care system. White respondents had access
to health care related to their father’s employment. As
adults, the African American and White respondents had
insurance through their own employment. One of the White
women described a period of time when she worked but did
not have insurance with a resultant loss of access to
health and breast cancer screening.

Theme Five: The Influence of Personal Responsibility

The influence of personal responsibility for health
care is evident throughout the respondents’ descriptions.
Implicit messages that the women needed to conduct
themselves in certain ways to remain healthy were conveyed.
Each of the women learned the value of health as part of
their family ecosystem structure and adapted these learned
behaviors within current health care practices.

Only one of the women interviewed spoke of her
decision-making in direct relationship to her perception of
quality of life and the needs of her family. All other
women spoke of their decision to participate in breast
cancer screening as a result of information they had

received from physicians or because they “knew” the

212

appropriateness of the screening test based on their age
and need for early detection. The women in this study felt
it important to participate in breast cancer screening for
personal health. The culturally specific attribute this
behavior describes is cognition, as an individual
expression. Triandis (1995) defines the individual
expression of cognition, as a “focus on personal needs and
rights”.

White women described the lack of discussions with
their spouses related to health care, yet all of the women
in this study described playing some part in the health
decisions for the entire family. Roles for women as family
health advocates have not changed over the life course, and
family ecosystem processes (Bubolz & Sontag, 1993) reveal
women as the decision makers for the family while taking
personal responsibility for their own health needs.

Methodological Issues

While the semi-structured interview format guided the
interview process, no two interviews were the same. Some
respondents freely shared information and seemed to enjoy
the process of discussing these topics, while other
respondents provided limited answers, even with prompting.
This prompting at times led the interviews astray or

prevented a full response to the next question. While

213

clarifications were sought, some of the respondents
provided such limited answers that in depth prompting would
have tainted the responses to the questions. The ecomaps
provided some validation for the responses, especially
among those respondents who described difficult
relationships with their mothers in the family of origin.
Those difficult relationships were depicted with the
ecomaps.

The ordering of the questions changed after the first
two interviews. The question asking for adages or sayings
about cancer originally preceded a question about the
meaning of cancer. The ordering of these two questions in
subsequent interviews changed because it was more logical
to ask questions about the meaning of cancer before asking
about sayings and adages. A second issue involved a
question that was ineffective in eliciting the desired
response. The question is presented in Table 4 along with
the intent of the question and how the respondents answered
the question.

While the question did not elicit the response
desired, it did not affect the overall research. Responses
to other questions provided a sense of learned health
behaviors within the family and how women made the decision

to participate in breast cancer screening.

214

Table 4

Difficult Interview Question

 

Question
In the decision to
(or not to)
participate in
screening tell me
the factors you
considered.

Question Intent
What family
related factors
are taken into
consideration when
deciding to
participate or not
in breast cancer
screening? Did
the respondents
consider their
family needs
first?

Question Response
Whether they knew
about breast
cancer screening
or whether their
physicians had
told them to have
the screening.

Using an interview format and semi—structured

questions facilitated the interview process by exploring

the themes as they emerged rather than counting the numbers

of individuals exhibiting a particular concept

Corbin, 1998).

(Strauss &

The exploration of health and breast cancer

screening beyond the limits of a structured questionnaire

(and my perceptions of why women do or do not participate

in breast cancer screening)

of qualitative methodology.

was facilitated through the use

Throughout the interview

process I was aware of my personal biases and beliefs about

the use of breast cancer screening services.

The findings

indicate that it is important to understand the health

beliefs of an individual within the cultural context of

215

learned health behaviors before fully understanding the use
of screening services.
Limitations

There are several limitations of this study. The
sample involved in this study is not representative of all
women age eligible for breast cancer screening and who have
a higher level of education, income, and insurance. First,
while there were both African American and White women
involved in this study, there were only five of each
represented. Second, the interviews were conducted with
women who were known to the researcher, and as a result the
responses may not have been as forthcoming as they may have
been. Third, one of the women was a registered nurse, and
two of the women worked in ancillary services within the
health care system. Whether or not this changed their
opinions about health and the use of services is unknown.

A fourth limitation involves barriers to health care.
The respondents were not asked specific questions about
their knowledge of income or insurance within their family
of origin. This may have been helpful to fully understand
their use of health care services within their family of
origin.

The fifth limitation of this study is that it only

focused on African American and White women without

216

including other ethnic or racial communities. Therefore,
it is not known how women from other cultures might
respond.

Lastly, this study was conducted in a Midwest
community among women who where raised and who currently
live in urban or suburban centers. The differences in
responses to these questions among women who live in large
metropolitan or rural communities are unknown.

Recommendations for Future Research

This research was limited to questioning women who
have access to health care services. There remains the
question of how women who have limited resources or
education would respond to the same questions.

This study did not determine baseline-screening
knowledge. Future studies should collect quantitative
baseline knowledge information along with the qualitative
questions and compare the responses. This approach may be
more useful in understanding the needs of women who are
eligible for screening and the development of educational
materials.

Broadening the study to include respondents from other
geographic or regional locations and ethnic or cultural
communities would add depth to understanding health and the

use of screening services. Using an ecosystem approach

217

within other groups of women could reveal how health
beliefs and learned health behaviors are developed and
disseminated.

This study included women who have health care
providers who they know and have grown to trust. Further
study regarding the use of health care systems with
inconsistent health care providers may influence the use of
services even among women who have insurance and income.

This study did not include women who lack insurance
and have lower education but who have access to federally
funded screening programs. Understanding the beliefs and
learned health behaviors of these women may help to
understand the structure needed to broaden the use of these
programs by other women.

This study revealed that some African American women
had access to health care within their family of origin as
a result of their mother’s employment. This informal
system of care no longer exists. Understanding if this
phenomenon was widespread and how the change from domestic
service work to wage earners influences access to health
care is worth exploring. Future research needs to explore
whether the current plight of African American women and

their access to health care has worsened since the 1960’s.

218

A longitudinal examination of the use of screening
services would be more indicative of the effects of life
course changes. Because the women in this study were in the
decade when mammography use is first recommended, we do not
know how their use of the services may change with aging
and as they face additional life course events and
transitions. A longitudinal exploration also would reflect
changes in access to breast cancer screening as a result of
welfare reform.

Future research should involve intergenerational
groups of women to ask mothers and daughters the same
questions to better understand the rationale behind certain
health messaging. Women within this study reflected their
perception of the health messages they received from their
mothers. Each believed that they were more open with their
current families in the types and content of health
messages. A better understanding of the development of
learned health behaviors and health messaging would occur
through intergenerational research.

Finally, similar questions about learned health
behaviors should be asked of men to fully understand the
role of women as arbiters of family health. This research
reveals the implicit nature of personal responsibility for

health among women, but it is not clear if men would

219

receive the same health messaging from their families of
origin.
Implications

This research was constructed using qualitative
methodology and theoretical frameworks to develop research
questions and deliver them in an interview process. The
frameworks that served as the foundation for this study
were Bengston & Allen (1993) and Price, et al., (2000) life
course theory and Bubolz & Sontag (1993) family ecosystem
theory. These frameworks affected the design of the
research questions. The life course theory (Bengston &
Allen, 1993; Price, et al., 2000) asserts that over time
the individual within the family as well as the family
system change. This informed the use of the family of
origin and the current family as a context for
understanding health. The family ecosystem (Bubolz &
Sontag, 1993) stressed the interaction of the environments
surrounding the family and the influence of these
environments on the use of services. These two theories
functioned to provide a broad context for this research.

The interview process revealed the great influence of
the family of origin on learned health behaviors and how
women transform this information for use in their current

families. These learned health behaviors are adapted with

220

access changing knowledge. The use of ecomaps helped to
demonstrate support systems related to the decision-making
process. Educators should incorporate this knowledge in
programmatic development and construction of resource
materials. Practitioners should understand that health
behaviors are learned in childhood and develop health
delivery approaches that consider the effect of learned
health behaviors on current practice. For example, only a
few of the women reported learning about prevention
(immunization and dental health) within their families of
origin yet these behaviors continue in their current
families. Researchers should study change in behaviors
over the life course to understand the most effective means
of facilitating the use of health promotion models of care.
Women are the arbiters of family health and View other
women as their support systems for making decisions in
conjunction with their health care providers. Learned
health behaviors within the family of origin transcended
the generations and facilitated the use of breast cancer
screening services. Health information from providers and
from the media is considered in the decision making
process, therefore women need to have knowledge to make
appropriate decisions for the use of screening services.

Current breast cancer screening programs and media coverage

221

acknowledge the roles that women play in supporting each
other in the decision making process. Women need to
understand the influence of learned health behaviors and
knowledge on decision making related to breast cancer
screening. Educators should consider the individualized
educational needs of women that facilitate decision—making
and understand the sophisticated levels of knowledge
accessible to women. Practitioners should determine the
support systems available to women in the decision-making
processes and family related factors among women who are
non—participants in screening. Researchers should study
the influence of women as arbiters of family health on
decision making related to cancer screening services.

Women have preconceived beliefs about cancer and
health behaviors learned within their families of origin.
Cancer is feared, yet early detection is recognized as way
to diagnosis cancer when it is most treatable. Educators
should determine a woman’s beliefs about cancer and
baseline knowledge before the development of educational
programs to incorporate appropriate knowledge.
Practitioners need to be aware of women’s belief systems
and learned health behaviors in understanding non-

participation. Researchers should study the influence of

222

health behaviors learned within the family of origin on
current health practices.

Parents should realize that they could influence the
decision making of future generations by teaching their
children appropriate health behaviors. Educators should
develop parenting programs that stress the importance of
the influence of learned health behaviors. Practitioners
in extension programs should include this realization in
the development of parenting and health education programs.
Researchers should study health behaviors and how families
explicitly and implicitly teach about health.

Future Research

While the theories presented formed the foundation for
this research and helped to understand learned health
behaviors and the use of screening services, the influence
of communication within the family is limited. The use of
a communication theory may have helped to understand the
rationale behind the selective health messaging revealed in
this study. Also, while the family ecosystem stresses the
decision making processes used within the family in
relation to values, needs, goals and standards, it does
nothing to understand the barriers faced by women when they
decide to use the services and the services are simply, not

available. A focus on a communication theory and a social

223

exchange theory would allow investigation in these
unexamined areas.
Researcher Reflections

This research began with the intent of understanding
decision-making used by women related to breast cancer
screening. The decision to interview women that I knew was
made after careful consideration of the time I had to
complete the work and factors related to trust. I was of
the same generation as the women I interviewed and could
empathize with many of the ways that these women felt about
their relationships with their mothers. Having had
relationships with the African American women also reduced
any mistrust they may have felt about the intent of this
research and reduce any insider/outsider issues. As I
reflect on this experience, I find myself focusing on how
this experience has changed my practice.
How I have changed

I knew that the result of this study would be the
fulfillment of a requirement in completion of my doctorate
in family studies. I also knew that I would find something
out about the decision making processes women use in
deciding whether (or not) to participate in breast cancer
screening and family associated factors. I did not

anticipate gaining an understanding of the influence of

224

learned health behaviors on decision-making. However, that
idea makes sense when I think about the decisions my mother
made before her diagnosis of breast cancer. The decisions
were the result of learned health behaviors she acquired
from her mother and family of origin.

I am much more aware of the role of learned health
behaviors on the decision-making processes used by
individuals. I reflect on the stories that women have
shared with me about their health care decisions, and I
realize that experiences of the past influence the present.
Consequently, I believe that all health care decision
making results from practices learned in childhood, whether
related to health promotion, disease prevention, or early
detection. I consider this new understanding as I conduct
my work at the Cancer Center.

As I work with women from diverse backgrounds I ask
questions that will help me to understand the rationale
behind their decision-making. I no longer assume that my
frame of reference is the same as all other women. As I
develop educational materials for use with women from
different cultures I am aware of the need to determine if
the information “makes sense” from their perspective. It

has become clear to me that how individuals respond to the

225

health care system today is dependent upon those behaviors
learned in childhood.
Summary

This research contributes to an understanding of the
influence of learned health behaviors on the use of breast
cancer screening services within a life course and family
ecosystem perspective. The data indicated a strong
influence from the family of origin on the formation of
current health related behaviors. Health care providers
need to be aware that consumers of health care have
preconceived beliefs and health behaviors learned within
their families of origin that influence their decision-
making processes. The research would suggest that women
have the greatest ability to affect health behavior changes
within their families and do so based on the acquisition of
knowledge.

The narratives presented illustrate the influence of
the family of origin on the development of health beliefs
and values. Parents need to be aware that the health
messages they relay to their children will change over time
with the availability of new knowledge, but that health
messages will resonate across the generations for future

use. Together families and health care providers can work

226

to disseminate accurate health messages that result in

learned health behaviors for the benefit of all.

227

APPENDICES

228

Appendix A
Informed Consent (Interview)
FAMILY ECOSYSTEM AND LIFE COURSE FACTORS RELATED TO BREAST
CANCER SCREENING

Name:
Address:

 

 

 

You are being invited to participate in a research project
that is studying the relationship of family to breast
health and breast cancer screening among women living in
Kent County, Michigan and the surrounding community.

If you choose to participate in this project, you will be
interviewed by Susan Hoppough, a doctoral candidate at
Michigan State University. The interview will take up to
three hours of your time. The interview will be
audiotaped. To protect your privacy you will select a
pseudonym that will be used in place of your name. Only
the researcher will know the name assigned to you. In the
publication of this study direct quotes will be used. When
using direct quotes, the pseudonym will be used in place of
your name. Any other responses you offer during the
interview will be combined with others, making your
response confidential, and your privacy will be protected
to the maximum extent allowable by law.

There are no foreseeable risks or discomforts for you
associated with participation in this study. There are no
immediate benefits for you for participating in this study.

Your participation in this study is voluntary. If you
decline participation, you will not be penalized in any
way. If you decide to participate, you may choose to
withdraw at any time or refuse to answer any questions
without penalty. By signing this form, you allow for the
use of direct quotes in publications of this study.

229

If you have questions or concerns related to this project,
please contact:

Susan Hoppough, MSN, RN Dr. Barbara Ames
921 S. Macomber Michigan State
University
Greenville, MI 48838 13 F Human Ecology
616-754—5211 517-432-3324
hoppoug1@msu.edu ames@msu.edu

 

 

If you have questions or concerns regarding your rights as
a study participant, or are dissatisfied at any time with
any aspect of this study, you may contact-anonymously if
you wish- Ashir Kumar, M.D., Chair of the University
Committee on Research Involving Human Subjects (UCRIHS) by
phone: (517) 355-2180, Fax: (517) 432-4503, e-mail:
ucrihs@msu.edu, or regular mail: 202 Olds Hall, East
Lansing, MI 48824.

 

Your signature below indicates your willingness to
participate. Thank you for your time.

Signature: Date:

 

230

Appendix B
Social Ecomap Instructions

The "ecomap" is a tool to help in understanding you and
others with whom you interact. The larger center circle
represents you. The smaller circles represent other
people, places and groups in your daily life.

To complete the ecomap, please, follow these directions:

1) Fill out the blank spaces of the larger circle with your
name, birth date, and names of those in your
family/household (e.g., spouse and 2 sons), marital
status, total years of education (12years is high school
graduate), and employment status (working full-time,
working part-time).

2) See the picture at the bottom right of the ecomap sheet.
Using the picture as a guide, draw lines to connect the

larger circle with the smaller ones. If there is no
relationship between you and a circle, DO NOT draw any
line. For example:

0 If you have a close relationship with "household
members", draw a thick line between the larger circle and
the small circle labeled "household members", like this:

—

3)For each line, draw arrows to show the direction of the
relationship between you and the circle. For example:

0 If you have a two-way relationship with your household
members, draw 2 arrows (one at each end of the line),

like this: H

4) Draw and label circles as needed to tell us about other
people, places and groups in your daily life that were
not on the drawing.

If you have questions about how to complete the ecomap, the
interviewer will help you.

Thank you for participating in this study!

231

Appendix B

Figure 5

Social Ecomap

 
  

    
    

Co-
workers/
Peers

Household

members

 

 
  
     
 
 
    
  
   
 

  

Siblings
other family
members

Health
care
provider

  

Friends,

Neighbors

 

Name:
Birth date: __/__/
Family/household composition:

 

 

 

Marital status:
Years of education:
Employment status:

232

Appendix B
Table 5

Social Ecomap Legend

 

Relationship Meaning Line Representation

 

Conflictual Relationship
Good Relationship

Close Relationship
Distant Relationship
Stressful Relationship

No Relationship

 

W
C:
,

Directional Energy Flow

233

Appendix C
Interview Guide

0 Tell me about yourself and why you agreed to participate
in this study.

0 Suppose you could only use one word to describe
yourself. What word would you choose?

Past Experience

0 When you were growing up, how did your family define
health?

0 When you were growing up, how was health discussed in
your family?

0 Think back to your first memory of an event that was
health related. Describe for me the memory? What kinds
of decisions do you remember related to this health
event? Who was responsible for the decisions that were
made?

0 What kinds of sayings or adages do you remember your

parents or grandparents using to talk about health?

0 What kinds of sayings or adages do you remember your

parents or grandparents using to talk about cancer?

0 As you were growing up, what was the meaning of cancer

as defined in your family?

234

Appendix C

Interview Guide (Continued)

0 Think back to the first memory you have about cancer.
Describe who was involved and how this memory made you

feel.
0 What were discussions of cancer like in your family?

0 What did your mother or other family member teach you
about breast cancer in particular?

Current Experience
0 How do you currently define health?
0 How is health discussed in your family today?

0 Who is responsible for health related decisions in your
family and how is this different or similar to the family

you were raised in?
0 What sayings or adages do you use to talk about health?
0 What does cancer mean to you?
0 How is cancer discussed in your family today?

0 What are you teaching your family about breast cancer in

particular?
0 Tell me what you know about breast cancer screening?
0 Have you scheduled or have you had a mammogram?

0 In the decision to (or not to) participate in screening

tell me the factors you considered.

235

Appendix C

Interview Guide (Continued)

Reflection

What do you think is different about the way health or
cancer is discussed in your family today compared with
the family you grew up in?

What is different about those viewed as responsible for
family health today compared with the family in which you
grew up?

Is cancer and cancer screening discussed/viewed
differently in your family today than the family in which
you grew up? If so, how different? If not, how the

same?

How many years have you been married? How many children do

you have? What are their ages? Are your parents living?

If so, do they live close to you or far away? How many

brothers or sisters?

236

Table 6

Appendi D

Culture Specific Attributes*

 

 

CULTURE
SPECIFIC COLLECTIVISM’ INDIVIDUALISM
ATTRIBUTE EXPRESSION EXPRESSION
Self- Groups are basic units of Individuals=basic
perception social perception. Sets of units of social
relationships organized perception. Focus on
around an individual. the individual.
Attributions Attribute events to external Attribute events to

Identity and
emotion

Cognitions

Motivation

Attitudes

Norms

values

Social
behavior

Attitudes

toward privacy
Communication
Responsibility

Professional
Behavior

*Adapted from Triandis, H. C.
Westview Press.

Oxford:

causes.
Identity defined by
relationships and group
membership. Emotions are
other focused and short.

Think about needs of the in
group.

Reflection of receptivity
and adjuStment to others
needs.

Reflection of sociability,
interdependence, family
integrity.

Consensus concerning the
roles of men and women.
equality or need to
distribute resources.
Family security, social
order, respect for
traditions, honor
parents/elders, security,
politeness.

Shift behavior contextually
(with in group versus out
group) resulting in less
evident personality.
Personal business is group
business.

Use

Emphasis on context concern
for the feelings of others.
Collective responsible for

wrongdoing of one of its
members.
Select, evaluate and promote

based on loyalty and
seniority rather than
personal attributes.
(1995).

237

internal causes.
Identity based on what
they own and their
experiences. Emotions
are ego-focused and
long duration.

Focus on personal
needs and rights.
Reflection: internal
needs, rights can
withstand social

pressure.
Reflection of self—
reliance, hedonism,

competition and
emotional detachment.
Lack of consensus
about the roles of men
and women.

Curiosity,
broadmindedness,
creativity, exciting
and varied life,
pleasures.

Non-shift of behavior,
personality evident
regardless of group
relationship.

People should mind
their own business,
respect of privacy.
Emphasis on clarity.

Individual responsible
for wrongdoing.

Use personal
attributes than group
membership.

Individualism and collectivism.

Appendix E

Table 6

Ecomap: Social Relationships

 

 

Name A+ 3* c* 0* 5* r*
Kim ——> H ................. 6
Coffy H 6 ---------- p ‘ ............. >
Maya H <—> <—> 9
Sojo ~4va ‘ ............. , ‘__ H
Rose W H <——-> O <—>
Amy <—-—> +—> <—>
Hayley —’ H -— O
Bambi Q 6 ------------ p ......... 6
Cissie — H {— Q
Yvonne H H <—> <——> H

*A=Church, B=Friend, C=Friend/Neighbor, D=Health Care
Provider, E=Neighbor, F=Social Group, G=Education

238

Appendix E (Continued)
Table 7

Ecomap: Family Relationships

 

Name *H *M *N

 

Kim

t ,:

Coffy
Maya
Sojo W ...................
Rose

Amy' “-.’
Hayley

Bambi

Cissie

Yvonne
* H=Father, I=Mother, J=Daughter/Son, K=Household Member,
L=Siblings, M=Significant Other, N=Sister

239

Table 8

Appendix E

Ecomap: Work Relationships

(Continued)

 

 

Name Coworker Employer Manager Work
Kim H 4'—- __p
Coffy H <—> <—>
Maya d—b —> H
Sojo W <—> 4—> «A;
Rose <——> <——> 4—>
Amy <t——i> ‘t——$> <‘——$>
Hayley H 6 H
Bambi {— - <—> —>
Cissie H H H
Yvonne ‘ ............. p H H

240

Appendix E (Continued)
Table 9

Ecomap: Results Legend

 

 

Relationship Legend Symbol
Conflictual ”\PV\
Good
Close —
Distant 00000000

Stressful‘
None

Flow of Energy
Away From

Toward

m 0:

Bi-directional

241

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242

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